Stop Seizures Now

End of the Blog

2012-01-14T13:28:00.000-08:00

Love one another. If you have a child with a medical condition, such as Angelman Syndrome, call either the ASF or FAST. They are there to help. Same goes for any other, and love one another.

Angelman Syndrome, the Families Amaze Me

2012-01-12T03:08:00.000-08:00

Every time I have been at an event, with children and adults who have Angelman Syndrome, I am amazed by the level of compassion displayed. It could be anything from the Walkathons to other, smaller events, but the power of these families has lifted me up during my darkest of hours. Angels, as we all know, require around the clock, 24/7 care, and even though this is necessary, they have the heart of champions. Their parents, grandparents, and friends do too. Even with this economy, cut services that all have to contend with, there is a "can do attitude," that inspires so many. Twenty years ago the Angelman Syndrome Foundation at www.angelman.org was created, and what was once impossible, is now closer to reality than ever before. A cure or at least therapies that can help angels.

When the time comes, let's hope, let's pray, that the work of doctors and researchers around the world, can make this event happen. It doesn't matter what organization you belong to, that is involved in this effort, as everyone has their "pair of jeans" that they are most comfortable in. Rather what does, is supporting each other, giving researchers and others who knew our help, their support. A lot of them right now are working hard, and they specifically want, all of the enthusiasm that can be garnered, to be written to them, to folks in the pharmaceutical field, on social media, along with the conventional media that is still powerful. If that passion is lost, the work of a small group of people that over the years is simply unbelievable, do you really want it to go on the backburner?

I do not. We should not. Each and everyone of us, should be supporting each other, angel families, and also at the same time showing the passion that we have in a professional manner. We owe it to the children and adults who have this condition. It is imperative, now more than ever, as we get closer to these discoveries, to band together, and show the collective understanding that researchers and those working hard for a cure, need to see that we are walking hand in hand with them. The same goes for pharmaceutical groups, science based institutions, and your local representatives. They have got to constantly hear "Angelman Syndrome," until they all have discovered what this condition is, and are on board with us all. Angelman Syndrome is a condition that leads to loving people, and may we be more like them.

Tommy's Death Certificate-Seizure, Cardiac Arrest, Angelman Syndrome

2012-01-11T05:28:00.000-08:00

I cannot look at my son's death certificate. It is far too painful, and it is tucked away in a closet, that is not used very often. While I do visit his grave, along with my family, and his rock memorial that was placed at his school, this piece of paper just opens up floodgates of emotion. Is his passing accepted? Yes, as much as it hurts, he certainly is with God, and a whole bunch of hearts, whether it be family, friends, or those who worked with Tommy over the years have been affected. There has been sorrow, but there have been profound acts of kindness, and a new view of life, with a focus on the possibilities. Each day is a blessing, and we must count each as that, even if it does bring the proverbial headaches that, life sometimes throws our way.

Recently, there have been astounding developments, with regards to Angelman Syndrome. Topoisomerase inhihibitors, as Dr. Philpot at the University of North Carolina Chapel Hill, might provide a cure or at the very least therapeutic help to those with this condition. These cancer fighting drugs are FDA approved, and although there have been years of frustration and love at the same time in the Angelman community, now is the time to focus on this. We owe it to our angels, those with us, those in Heaven, to speed up the process and cut through red tape, thus allowing for clinical trials to begin with all haste. It is up to us, the very essence of self-reliance, to make this happen. By showing those who have been involved in the research what this means, along with applying benevolent pressure to those in congress and in other agencies such as the FDA and the U.S. Department of Health and Human Services, we can get the ball rolling. Dr. Jonas Salk's once impossible feat of defeating Polio became possible, let's do the same with Angelman Syndrome.

Everyday, I wake up and try to seek out new possibilities. I do not want another parent of a child with Angelman Syndrome, or anyone for that matter, to go down the dark road of losing their little one. It is at times very lonely, painful, and it cuts right through your soul. Angelman Syndrome has caused so many children, parents, grandparents so much pain, and its a contributing factor to my son's passing. That's right, its personal, and until there is a cure, there must be absolutely no resting on laurels, no complacency, and only advancing this cause until the red tape is cleared away. We owe it to all of those with Angelman Syndrome, and their family and friends, nothing but the best. By contacting those who have been responsible for this research, and those who can expedite the clinical trials, we must give all we have.

Happy Birthday to the Angelman Syndrome Foundation

2012-01-07T04:16:00.000-08:00

When the Angelman Syndrome Foundation at www.angelman.org was created, I was learning how to drive a car. Most of the time, this involved my parents, watching out as my sharp right or left turns caused various items in the car to become flying projectiles. 1992 was a fun year, as I had Biology class, of which I spent a good part of it, throwing basketballs made of notebook paper into an empty fish tank, that the teacher couldn't see high above the cabinets. My group of friends and I, defied physics with various stunts in cars that shouldn't have been done, including trying to impress the ladies, with efforts that didn't end up too well but are now quite amusing. Yes, the eye rolling occured even back then, as it does now, and I remember this was around the time that I for the first time saw people with special needs. I was uncomfortable. No, I did not harbor any ill feelings towards them, but our high school was a magnet school, for youth with various intellectual disabilities. I used to avoid these kids, as I just didn't know what to say, what to do, or how to act.

We have come a long way. The same school and the new generation, are incredible. Its night and day difference, and I had my introduction to a child with special needs with Tommy. Yes, receiving the diagnosis of Angelman Syndrome was devastating. It hurt so badly, to hear that I was now the father, of a child that was not going to play baseball, go fishing, or learn to become a history geek that I had so envisioned for him. Yet, I learned a lot from Tommy, and the most important lesson was compassion. He hugged and loved everyone, and its something I've tried to do much more. I miss him very much, as he went to God far too early in 2009, but his legacy lives on. His school was a place of refuge, where the administrators and teachers, everyone there, were passionate about children with intellectual disabilities. Young students, of elementary age "get it," as they are giving up their recess and lunch time, to partner up with kids who have Angelman Syndrome and other conditions. Those were my best subjects, and I am thankful that these young girls and boys are making such sacrifices. I tell them this on a regular basis, and it has been proven, to help so called "mainstream students," work with others who have disabilities.

So how does this correlate, with the Angelman Syndrome Foundations birthday? Very simply, the ASF is without a doubt the biggest and most influencial organization with regards to this condition. While there are other groups, the ASF's research money, that has been raised with the love and help of parents, friends, and businesses, have just proven that with already FDA approved Cancer fighting drugs, to perhaps having a cure for not only Angelman Syndrome, but a whole host of conditions on the Autism Spectrum and elsewhere. Recently published in Nature, the most respected journal, the Angelman Syndrome Foundation and all of its staff, volunteers, and everyone who has partnered with it, supported it, should be proud of this incredible accomplishment. There has been agony and pain along the way, but just like the ASF has not given up on a cure, we should not either.

The reach of the Angelman Syndrome Foundation is impressive. Worldwide. Yet, what really makes me happy about the ASF, is the walks. These are where I have gone with Tommy, and with him in Heaven, missed but still in my heart. My first one was very painful, as I went with Tommy and my family, and cried nonstop. It hurt so bad, but at the same time, it was reassuring. I saw different generations of angels, and parents who had gone the distance. These pioneers greatly helped a then younger man, understand that I would be able to enjoy Tommy's accomplishments, even though there were certainly hoops to jump through. I am thankful to these parents, along with the ASF's support with IEP's, understanding more what Angelman Syndrome is, and for their passion in not only awareness, but in finding a cure.

I miss Tommy everyday. He lost his life to a seizure, but his legacy must go on. With the Angelman Syndrome Foundation it most certainly does, as I am excited about the upcoming walk this May outside of the D.C./Baltimore area. This year promises to be exciting, with Dr. Philpot's research being released even more, and other efforts by the ASF and other groups, who all want the cure that has been elusive, but is now closer than ever. 2012 promises to be by far the most exciting year for Angelman families, and if you would like to make a tax deductible donation, to the Angelman Syndrome Foundation, simply go to www.angelman.org. Be a part of something good, from the heart, and that is going to both help parents that get that diagnosis and need moral support, along with being on the cutting edge of research that promises to bring new changes to the world as it stands. Happy Birthday to the ASF, to its staff, and to all of the families who have been responsible for its creation. You have touched many hearts, and continue to be an organization, that all can be proud of.

Rocking the Purple: Suck Feizures Ski's 2012

2012-01-07T02:39:00.000-08:00

Suck Feizures might sound harsh. Its meant to be. This facebook group, has folks with seizures, people who love someone with them, or has lost a loved one to seizures. It was created December 25, 2010 and has provided help and support to various epilepsy causes, both through awareness, and in generating funds for research. It has had a lot of amazing moments, and so much has been learned, that is hard to place a big star next to one event over the other. Yet this is the year, that we get together and ski. Feb 24-26 2012 is going to be both fun, and a period of reflection at Big Boulder Ski Resort.

"Epilepsy Awareness Weekend" it is, as the resort has been very kind, to help us make this possible. They are going to offer ski lessons, even adaptive ones if necessary, and two days of tubing, skiing, or boarding are going to be a lot of fun. It is a family friendly event, with ice cream socials, arts and crafts,free raffle, days out on the slopes, and of course an adult type of party at the Big Boulder Tavern on Saturday the 25th. Yup, the "red solo cup" from Toby Keith's song, are going to make their appearances. Designated drivers are already in place, so come one, come all, and show your spirit by wearing purple. That's right, the color of epilepsy awareness. It will not only be out at the slopes, but at the hotel, and the Big Boulder Tavern.

If you have any questions about this event, feel free to join "Suck Feizures", and although it might be too late to order the wonderful purple sweatshirts that a kind lady was able to make, its not too late to sign up for the trip. There are a few days left, to get a discount at the Comfort Inn right next to the resort in Whitehaven, PA, and this and the ridiculously low ski rates are due to Carmen, who understands the meaning of "rocking the purple." It is going to be a lot of fun, getting together, and seeing where this next adventure goes. This is about empowering those who have epilepsy or love someone with this condition, as 3% of the general population has this condition. Its time for it to go, and on the tops of the mountains in the Poconos, may that needle towards a cure move just a bit, and continue in that direction from there.

Vanderbilt Kennedy Center Angelman Seizure Research Project: Now is the Time

2012-01-07T02:23:00.000-08:00

Dirt placed on my son's grave. Carrying my son in a casket, instead of on my shoulders, down the stairs leading to that place, where he is buried six feet deep. This is sadly not an isolated event, as other children with Angelman Syndrome, have gone to God far too early. Seizures are directly responsible for this, and they must be cured, because it is a moral battle that we are all in the trenches for. The pain of finding your own flesh and blood unresponsive, is beyond any words that can be placed in print, or typed on a computer screen. It is visceral, tearing apart the very essence of your soul, and there are children with Angelman Syndrome right now, who need your help. Angelman Syndrome is caused by a deletion of chromosome 15, and if Tommy was with us right now, he would be seven years old. Yet there are other angels right now, who are loved so very much by their families, in the ICU or having parents stay up all night with them, due to the vicious seizures that must be squashed.

There is a mom, sitting by her child at the hospital, praying that her son is going to somehow stop seizing up, while hospital staff crash teams respond to that room. A Dad is having to call 911, having found his daughter seizing up, and turning blue from a lack of oxygen. Grandparents with their little one that they are so fond of, are thinking "Is this the time?" Enough is enough, as even if an angel survives a seizure, the wiping out of developmental milestones, often years of work, is unacceptable. While most of the time children and adults with Angelman Syndrome do bounce back fairly well after seizures, why should they have to suffer through these? Why should their family members as well?

The Vanderbilt Kennedy Center in Nashville, TN offers hope. There is a Angelman Seizure Research Project that you can help with, by making a donation at http://kc.vanderbilt.edu/site/giving/. It is tax deductible, and by going down to the online giving area, you can just type in "other" Angelman Seizure Research Project. This is led by Dr. Kevin Haas, a neurologist, and several other researchers, including an angel mom who has much compassion and dedication to this endeavor, that deserves much more attention. Are you saying the Vanderbilt Kennedy Center sounds familiar? If so, it might be because you saw Darius Rucker's "Music From the Heart" during the 2011 Country Music Awards. There he performed with children with various conditions, and it was, if you haven't seen it, by all means go to youtube and watch this. You will have tears rolling down your face, but they are of the "good kind."

Children with Angelman Syndrome, are loved by so many. While my boy is no longer with us, I still very much love him, and love all the other children and adults affected by this condition. A simple hug at a walk or out on the town, mean a lot. There are always tears, but they are accompanied by a huge smile. Let's help these hugging, loving souls be free of the seizures that have caused them, and those who love them so much heartache. By donating to the Vanderbilt Kennedy Center's Angelman Seizure Project, you are making the possibilities of a child, not losing their abilities or life, far too early. http://kc.vanderbilt.edu/site/giving/. This is a organization, that you can donate, knowing that you might just save a life. What better cause, can there be than that?

Morning has Broken: 2012 Holds Many Possibilities

2011-12-31T06:16:00.000-08:00

"Morning has broken, like the first morning,
Black bird has spoken, like the first bird.
Praise for the singing, Praise for the morning,
Praise for the springing, fresh from the word.

"Morning has broken is without a doubt, one of the most peaceful songs ever penned. Although it was published years ago, it was Cat Stevens who really put this hymn on the map, and I am forever grateful. It has been a song that has help during painful moments, when despair seemed to be all that was around,and hope seemed bleak. This and Sarah Chang's "Air on G String", where she makes the violin cry, do provide solace for these times. Each of us in our lives, faces loss, and the key to it, is accepting it no matter how horrible it is. While the traditions and songs might be different across the globe, the feeling is the same, especially when it involves a child. Yet, even the loss of a parent, brother, sister, aunt, uncle, friend, or anyone who has had significance in our lives, is going to lead to feelings of profound sadness. You never know how much you love someone, until they are gone. That is when you will understand the true depth of love, and while we each have a day, the key is enjoying everyday as a blessing.

2012 is upon us, and as we say goodbye to 2011 in the rear view mirror, it is a time for thinking about what all of us should be doing in the new one. I make the same promise ever year, and that is to stop using a certain word, because it is broken as soon as the alarm clock goes off on Jan 1st. Yet, at the same time, while it is just another day, sometimes it is good to go to a quiet place, and just reflect on what the previous year, and times before it have taught us. I used to scoff at the thought of "stopping by to smell the flowers," but going on a hike, and just enjoying the gifts that have been bestowed to us, make it even more worthwhile even with the various challenges. A quick bike ride through a forested area, or lacing up the boots to take it all in, provides some respite from pain, from stress, and also is just a place to find that little bit of tranquility.

Each of us should do that from time to time. A college professor of mine, whom I still greatly respect, used to say "mind, body, spirit." It is so very true, and I am thankful for his lessons, along with his humorous approach to life. He never said it, but I have a feeling that he had seen a lot in his lifetime. What will 2012 bring? Who knows, but whatever it is, the key is just doing the best that all of us can. Life throws us all kinds of challenges, it is how these are responded to that matter. I'm very excited about this year, as I hope it is going to bring amazing scientific discoveries, possibilities that were never conceivable being a reality, and a lot of fun at the same time. In honor of Tommy, who is missed, and all angels who's families are grieving right now, you are not alone, nor shall you ever be. Each morning begins anew.

A Night at the Ice Arena: Angelman Syndrome and Other Conditions

2011-12-29T17:07:00.000-08:00

Earlier this afternoon, my wife and I went ice skating. Make that my wife, as I was pleased to watch her have fun, and not end up as some wreckage that would be run over by the Zamboni machine. As a rather physically ungifted specimen, I smiled seeing her grinning, and also by the huge crowds that were out on the ice. It brought back a lot of memories, as it was the same ice arena that I used to skate at, as an awkward high schooler, wearing my cheesy vintage Washington Capitals hockey jersey. I took a bit of a hike, looking at the former "pro shop" that doesn't sell any NHL merchandise, but rather skate equipment only now, and the same hot dog machine that appears to have the same chicken and other mechanically separated parts on it, from back in the mid 1990's. They are now vintage hotdogs, due to that age. The locker area stunk of that same eau de Right Guard that it always has, and the video game machines, have been upgraded to more modern titles. Yet, in many regards it is the same. There are still those folks in orange jackets helping skaters who have taken a tumble, and the spirit of being able to accomplish various skater stunts, remains in the air. Four and five year olds are able to fall down hard, and yet bounce right back up. It must be nice.

A bit of sadness crept into my mind, as we had visited my son's grave earlier in the day, and I looked at all of the children skating around, smiling and having fun. I couldn't help but smile a bit, but at the same time, I wondered, "if we do not find a cure for Angelman Syndrome or seizures," this generation is going to suffer as ours has. There were several hundred people in attendance, the majority of them being young children, and no one wants any of them to have to bury a child to a seizure, or have a child with Angelman Syndrome, who cannot tell them what is bothering them. A group of teenage boys were wooing young ladies in the rink, and I had to laugh at their attempts, as it was like looking at the past. No doubt, with the same methods that my friends and I used, they were out of luck with them from all appearances. We do not want these young men aka nutty creatures, or young women who do have common sense, to go through the pain that so many have endured. Giles Cory was right in the "Crucible", when he said "more weight." That's what is required of us, and we are closer to the cure than ever before. It will not be overnight, it certainly has not, but the work of folks like Dr. Philpot and Dr. Weeber, and so many more continue. The pharmaceutical companies, and research institutions, are on the same page compared to years past, so what do we do in regards to this?

First of all, we support each other. Angel families must not let "people issues" or "politics," or whatever it is get in the way of our love for each other. I have disagreed with many angel parents over the years, and that is fine, as I do not hold any grudges whatsoever. None. In fact, I feel the pain very much of angel parents, right to the heart, when all they want is to hear their child say a word. I had no understanding of this until recently, although my two year old is saying, certain words that might not be the best. There was a moment with the sports section, that caused both a frown and a around the corner smile, and I want all parents of children with AS to hear that. Even if its "that" word, that will be a major step forward, and a joy. I also pray and believe, in what Steve Jobs said in his book. He was a visionary, although not the easiest man to work for. Yet his quote of "We are now entering the time when biology and technology" will come together, that is happening at research institutions. It is speeding up the process of what was once deemed impossible, and now is the time, to remain focused, focused, and even more focused on that. In the movie, "Eyes on the Prize," if you have seen this classic, you will understand that very tenet.

Today was a success. My wife did beautifully on the ice, as it was her first time in years, of lacing up her skates. I enjoyed taking pictures, and trying to find the keys to the Zamboni machine, for a test run of sorts. Also the laughter of young people brought back some good memories, much happiness, and a reminder that it is now our time to cross the finish line. It was a whole mix of emotions, but the main one was that these children, should never have to experience either the devastation of a diagnosis of Angelman Syndrome, seizures that scare parents, sleep patterns that cause parents angst and much stress, fighting school systems tooth and nail, contending with services that may or may not be good based upon where you live, or the burying of a little girl or boy. Children and adults with Angelman Syndrome are beautiful just the way they are, and each parent when a cure does become available, will have to decide if they want it or not. I am not going to judge anyone's decision, but continue to make that an option, along with the destruction of seizures. It is a promise, that must be kept. This is a sacred one to God, that day after meeting a man who not only survived the hatred of Jim Crow, growing up without a father and having to make ends meet, but whom also lost a child, and represented the road map that must be carried out. As I walked out of the ice arena, my sleeve was pulled up to scratch an itch. There was my ink, that says exactly what matters surrounded by an angel, "Faith and Resilience."

The Tommy Ross Memorial Fund: Maryland Recreation and Parks Association

2011-12-29T06:08:00.000-08:00

It has been proven, that children with special needs, greatly benefit from recreational opportunities such as therapeutic horseback riding or swimming. Quality of life is what it is all about, and there are many families, who cannot afford these activities, due to having to pay for medicines, specialized equipment, and legal services to advocate for their cherished boy or girl. Here is a way to help these fighters, and their champions out by donating to http://www.mrpanet.org/docs/MRPA%20TRMF%20application.pdf. This is the Tommy Ross Memorial Fund, which my father Tom Ross and the Maryland Recreation and Parks Assocation, created to help those who want the best for their children. I am proud of my father and this organization, and to all of their kind people, who have not only established this but donated to this great cause. The night this was established, upon my father's retirement, was a moment that shall never be forgotten. It was an emotional night in many regards, as Tommy is greatly missed by our entire family, as he passed away from an Angelman Syndrome related seizure in November of 2009.

Yet what MRPA and my father have done, is in many ways, continued Tommy's legacy. He learned how to walk in a pool with his "Pop Pop", and it was an incredible night in the summer of 2009, when my wife and I were surprised by this. There is no doubt that this walking in the pool, led to his being able to walk across the living room, the week before he went to God. Too soon no doubt, yet he did it. So what can be done to guarantee other children with special needs, are given an opportunity to do the same, to not only make them happy but also provide smiles to grandparents, parents, uncles, aunts, siblings, and friends? By making a tax deductible donation to http://www.mrpanet.org/docs/MRPA%20TRMF%20application.pdf, you will help a person with a disability get a chance to flourish. If that is not beautiful, I do not know what is, and therapeutic activities are of great benefit to all whom are able, to participate in them.

Sometimes it is hard to visit the pool Tommy walked in, for the very first time. There is a picture of my wife and I walking him through the front gates, a few months prior to his passing. It hurts so much to look at that, yet at the same time, it provides a bit of hope. There are other children out there, right now, who could use that extra hand, so that they might be able to walk, sit up stronger, or just let them have some fun. If you can help this fund, you will not only help the current generations of children, but so many more, including family members who have the dream of an extra step of progress made. This is one way, that guarantees them, a chance at that. Just like Tommy, each step means more than words can ever express.

Sun Tzu and Seizures

2011-12-28T12:38:00.000-08:00

"Opportunities multiply as they are seized." Sun Tzu, although he lived years ago, has been studied by every professional military and paramilitary organization, for the very reason that what he has wrote is correct, with regards to combat operations. His writings, most commonly quoted from "The Art of War," have resonated with not only sailors, soldiers, and others, but should very much so with those who are fighting seizures. Those whom are waging combat against these, along with conditions such as Angelman Syndrome, CDKL5, Dravet's Syndrome, Rett Syndrome, and others, must incorporate his tactics, through mainstream media sources, but also through other efforts. It has to be a multi-tiered approach, much like a chess board, in that you have to have your pieces lined up before you strike. Right now, that battle is going on. There have been casualties, whether it be lives lost, dreams crushed, or financial woes due to constant medical issues that have caused a lot of pain. Yet now we live in the time, when all of us, across the globe, are able to stand united and say enough.

General Patton and in more recent history David Petraeus, are students of Sun Tzu. They have used various methods of everything from deception when necessary, to building relationships, and also bringing in their enemy to the same table. We are at that stage now, as it is time to defeat seizures, and this can only be made possible if we band together. 2/3rds of epilepsy are unknown. 1/2 of 1% of U.S. medical research money goes to seizures. That is unacceptable, and it is time to go on the offensive, whether it be through political pressure at the election booth and being involved in your community, using advantages that we have such as free radio time through FCC laws for public service announcements, the media, blogging, or social media, such as Facebook and Twitter. This is much in line with what Sun Tzu proclaimed, as the more we ping away at seizures, the more opportunities shall be reached, and from there we can have a victory over this menace. It is our enemy, and while it would nice if a magic bullet could stop them, we haven't reached that point yet. However, with the newest developments in technology, whether it be IBM's Watson that is being used for medical research, or other techniques of using supercomputers to configure mathematical equations or do beta testing without harming a human being, we are now in the prime position to cross the finish line.

Yet it won't be, if we rest on our laurels. Rather, we must what we can, on multiple fronts to get to what matters. That is results of course. Nothing else matters, and the methods to get there don't matter, whether they are good, bad, ugly, or a combination of all three. We must keep plugging away, as the new laser technology and less invasive procedures hold promise, as do numerous devices being provided via grant money from organizations such as the Epilepsy Foundation of America. There are other developments, at the molecular level that have occured at facilities such as UNC Chapel Hill and others across the world, and pharmaceutical companies are now involved in a lot of the research. No, they are not all Mr. Burns from the Simpsons, but rather they stand to make profits from treatments that work, and if they figure something out, kudos to them, and their stock portfolios and profits will reflect on that. It is almost 2012, and it is too late for some of our children, other family members, or friends. Others suffer from debilitating seizures, and it is our moral obligation, to do everything possible to improve upon their quality of life. This is our time.

The Stop Seizures Now Blog: International Baby!

2011-12-27T09:48:00.000-08:00

Coming up on the year mark, its hard to believe that this blog, has reached people across the globe. We really are becoming "smaller, closer" each and everyday, and I want to thank everyone who has read this, spread this, or contributed to it being possible. There are no words but thank you, but they are meant with all of my heart. The facebook group "Suck Feizures" is coming along, in our war against seizures, and we are just getting started over there. Other efforts including a ski trip, a winery fundraiser, and a trip to NIH(National Institutes of Health) are planned, and we shall continue to all do individual efforts in our community, that help our cause. That is to eradicate seizures once and for all, whether partnered up with the Vanderbilt Kennedy Center Angelman Seizure Research Project, the Epilepsy Foundation of America, or other allies and connections we've made along the way.

This year has had some exciting developments in the Angelman Syndrome and seizures fight for all, yet we must not lose our competitiveness, our passion, and our dedication to seeing these defeated. It is our time, so we must continue to trudge in the foxholes, and keep fighting away. It doesn't matter what age we are, or what country we are from, but rather that we are determined and united on this front, and giving what we can, not what we cannot, in this battle that is multi-layered and on many fronts. Where do readers from this blog reside? All over the world, and although Blogger is great, there are some statistical problems, with regards to gathering information on which country. However, this is the best effort, with that in mind. Here are the top ten countries, who have read this the most by order of "hit counts": United States, United Kingdom, Canada, Australia, Germany, New Zealand, India, Russia, France, and the Philippines.

Yet its not hit counts or anything else that matters. Wherever your residence, continue to fight seizures. There have been articles from this blog read in Argentina, Brazil, Chile, Greece, Indonesia, Iran, Gibraltar "the Rock", Spain, Japan, Malaysia, Morocco, Algeria, Peru, Mexico, Israel, Jordan, South Africa, United Arab Emirates, Sweden, Nigeria, South Korea, and Singapore. Thank you to all, and if your country was missed, blame Google for that, and sorry for not alphabetizing them, but that would be work :). So what does the next year hold? More blog pieces by various authors, involving conditions such as Angelman Syndrome, CDKL5, Rett Syndrome, and others, along with Generalised Epilepsy, and how seizures affect folks, and exactly why we must win this. It is too late for some, and we must move with haste for those who need the help right now. Other blogs to be rolled out include the upcoming ski trips and charitable endeavors, and 2012 promises to be an exciting year. Thank you everyone, and may your 2012 be full of hope and let's knock down some doors in the process.

Mike

Tommy's School Bus: Much Love

2011-12-27T00:08:00.000-08:00

I will never forget the first day, of seeing Tommy go off to school. All of us were apprehensive, as that bus rounded the corner, but "Porky" was ready to roll. He had a wonderful bus driver, and a kind assistant who reassured us, as all members of our brood was there on that warm autumn day. Even the dog. It was hard to believe that our Tommy, was going to get Early Intervention Services at a local school's preschool program, that worked with children with special needs. Tommy's diagnosis of Angelman Syndrome, which was caused by a deletion of chromosome 15, didn't stop him from the excitement of getting on that bus every morning. He would beam a huge smile when it came up, and he loved to go up on the ramp. It was fun to watch him going up in his wheelchair on that, and just see the joy. It was a little less fun, when the moving ramp didn't work, but that was a shared joke that we had with the bus drivers and assistants. There were a few times, that Tommy had to be brought by car to school, due to something in the lift's mechanism from acting up.

These bus drivers and their staff were so kind. If Tommy was sick at school, they would always bring his wheelchair back to us. Working in an area where he was, I often saw these drivers, and they all became family, just like the school. I think about my son a lot, as these memories provide solace, due to him going to God far too soon in 2009. Sometimes I still see the same one that he used to ride. Its a mix of emotion, although I take it as a good sign. It falls a lot into that Clint Black song "State of Mind's" lyrics of "Aint it Funny how a melody can bring back a memory." So very true. The other day I was walking in a school building, and saw this Thomas front. It was impossible not to stand by it, look at it, even touch it. I felt compelled to take a photograph of it, and while he is deeply missed, the joy of him going to school provided a lot of comfort by seeing this.

The Angelman Walk: The Importance of it All

2011-12-26T23:44:00.000-08:00

This is going to be my eighth Angelman Syndrome Foundation Walkathon on May 19th, 2012. It is going to be both joyful and painful, but much more of the former, as a hug from an "angel" means the world. The first walk in 2005 was an eye opening experience, as I was still in shock from my son Tommy's diagnosis of Angelman Syndrome(http://www.angelman.org/) in the previous November, and not sure what to expect. I cried a lot of tears, but at the same time, had a better understanding of what we were contending with. There are a lot of walks across the United States on this day, and depending on where you are, one should be within reason. We were blessed to have been only fifteen minutes to our first one, although it has moved a bit, its still close enough to get there easily enough. Getting to meet other people, provided a lot of relief, in first of all knowing "others have dealt with this." Its a huge weight off of your shoulders, and seeing younger and older "angels" as children with a deletion of chromosome 15, showed tangible results to how physical therapy and other services could be helpful.

Our whole family would get ready for every ASF walk. There was a finish line, some entertainment, educational materials, and most important of all, connections to be made. It is a lot of fun, and although each location across the U.S. has different activities, the key of course is hoping for the weather to cooperate. Every year has been the case, and some of my family members have chosen to jog the course, as we walked it. Our boy Tommy had fun at these events, and I'll never forget him and one of his buddies, grabbing at each other's chewies during the walk. Each angel crosses the finish line, whether immobile or otherwise, and parents, grandparents, siblings, cousins, and friends cheer. It is something that all in their lifetime should attend at least once, because I have a feeling that if you go to one, you will feel that you've just got to return. There is a lot of support here, and for a parent who has just received a diagnosis, this is where you can meet your "extended family," that you shall become close to.

Of course, the Angelman Syndrome Foundation's Walk is a fundraiser, and there's no minimum or maximum to attend. The last few years have been successful, and now it is paying dividends, with Dr. Ben Philpot's research getting much needed funds at the University of North Carolina Chapel Hill. His work with Angelman Syndrome, is without a doubt the largest yet, and has been featured in Nature, which is of course among the most respected scientific journals. The odds of a cure have been greatly improved upon with his recent discoveries, all of which are FDA approved, and parents of this generation and others need this hope. With each walk, and also each donation, I am honored to say that it is going to a well deserved organization, that is doing everything in its power to find not only a cure for Angelman Syndrome, but also provides support for families who really need it. This is even more important, considering how "spread out" the community is, with Angelman/AS being only one in every 15,000 births or so. At the walkathons or at http://www.angelman.org/, you can find information about services that might be available through your town or school, and find out what works best with regards to therapies until Dr. Philpot and the work of others continues on, to just deliver jaw dropping results.

My son will not be with me this year, nor was he there in 2011, or 2010. Tommy's last walk in 2009, I do not remember much of it, other than a lot of family from out of town came. We had a good time, and Tommy crossed that finish line, walking with assistance. It is very helpful to still go, as while he did pass away in 2009, due to an Angelman Syndrome related seizure, I feel obligated to be there, from the bottom of my heart. 2010 was brutally difficult, as I sat out in my car afterwards, just numb and completely upset. Yet last year was, of course filled with tears, but of the joyful variety. The Walk Coordinator asked me "Would you volunteer for anything?" My response of "anything you want," turned out to be a blessing. He is a wonderful man, and had me as the "Kids Entertainment", which is something that just seemed to be "Are you kidding me?" at the time. Yet he was right, as we had a karaoke set up, children, angels dancing along to the Justin Bieber music that has not been listened to since last year. It was a lot of fun, but the best part about it, was the hug from a young angel at the end. There are no words that can express my heartfelt thanks to her for this, other than a continued promise to be at each and every one of these, until that cure is found. 2012 will be an exciting year with this new research, and whatever Walk you are at, you shall find a lot of love, a whole bunch of support, and families who know you very well.

Dr. Ben Philpot and the ASF=Perfect Team

2011-12-22T18:11:00.000-08:00

The Angelman Syndrome Foundation at http://www.angelman.org/, has always had a special spot, in the hearts of many parents, families, and loved ones who have a child or friend with the condition named in this charity's name. Angelman Syndrome, which is caused by a deletion of chromosome 15, occurs roughly in 1 in 15,000 or 20,000 births. That is at least the best guess, but there are thousands of people whom have this condition, and we must do all we can to help enable them. Dr. Ben Philpot at the University of North Carolina Chapel Hill, may have just been the first to deliver the first real concrete steps, in research for improvements or a cure. How can a child with smiles and laughter not be perfect? This is very true a valid argument, and its for each parent, each family that has an angel in their life, to decide what is best for them. Recently, Dr. Philpot discovered that topoisomerase I inhibitors, these are anti-cancer drugs, can bring back dormant genes to life. This could very well lead to a cure for Angelman Syndrome, other conditions on the Autism Spectrum, and is the most exciting research to date on all of these.

It is incredible what the Angelman Syndrome Foundation, parents, families, and angels have done to make this a reality. Dr. Philpot and his team, and all of those who've been involved in this, should pat themselves on the back, for a job well done. While the work is far from over, the fact that these drugs are already FDA approved, should certainly bring human trials in a safe manner, up to speed much quicker than if they were not. So bring out that University of North Carolina Tarheels hat, and wear it with pride, because the Angelman Syndrome Foundation, has delivered upon a grant, that organizations hundreds of times its endowment amounts, have only dreamed about. It has not been an easy ride for many. Angels have been lost along the way to accidents and seizures, or there have been injuries due to mobility and other issues caused by this medical condition. Angels generally can speak but only a few words, if any, and this has a direct affect on their personal safety.

Dec 21 2011 was the official release from the Angelman Syndrome Foundation, of this great news, that was also published in Nature Magazine. For those not familiar with this publication, it is among the most respected scientific journals that can be found. Ask any scientist, medical professional, and the consensus will be a complete "thumbs of approval." This work has not been easy, whether it be the staff and volunteers who have given countless hours wearing multiple hats, or people doing all that they can do, to make sure that their angel has the best possible life. These are exciting times, and this very much follows what Steve Jobs said about "technology and biology coming together like never before." We must continue, the Angelman families across the world, to stand united. This is our time, and all the blood, sweat, and tears are now paying dividends. Thank you to all who have been on this battle, and this opening shot of sorts, is going to lead to even more discoveries ,for all that have been out on the front lines.

Special Needs Children-Stickers Do Help First Responders

2011-12-20T10:38:00.000-08:00

If you have a special needs child, what are you going to do when, not if you are in a car accident? That's right, when? Statistics show that in most areas of the United States, and in other parts around the world, that you will be in a car accident every 4.5 years. Some of these are mere fender benders, but sadly some of these are wrecks that can lead to traumatic injuries or worse. http://www.etsy.com/listing/88725438/alert-fireambulancepolice-of. At $6 plus shipping, wouldn't you like to have some "peace of mind," when you are involved in an automobile accident, especially if your child/young adult has a condition like Angelman Syndrome, or others, where their verbal abilities are limited? It does not matter whether you are in a rural or urban setting, with regards to accidents, or if the police, firefighters, and paramedics are paid or volunteer. What does is with regards to the proper triage, and in the case of a child with conditions where a person might not speak, move well, or have seizures, it is imperative to have them sent to a facility with the best possible "CRASH/TRAUMA" team. These decisions are handled at the scene of an accident.

A 5"x5" bright yellow display sticker, placed on your back car windows, makes a lot of sense. That color of course is one that is going to capture the attention of a first responder, or good samaritan in some cases who's a civilian, and might just expedite the process to making sure the right treatment and equipment is used in rescue situations. Knowing what you are dealing with, rather than what you are not, is paramount when in these cases. At only $6, plus minimal shipping, and with discounts for more items from http://www.etsy.com/listing/88725438/alert-fireambulancepolice-of, you can alert citizens and the authorities alike, when you have a automobile accident, that you have a child, or adult with special medical needs that is going to require another forms of medical attention. This well constructed and designed sticker is a brilliant yet necessary consideration, with regards to these types of situations, and its another "safety net," that should be in your arsenal.

How about the reliability of http://www.etsy.com/listing/88725438/alert-fireambulancepolice-of? Perfect. You will not have any problems here, and Tami the propreitor, is a fantastic parent and loving mother, of a child with Angelman Syndrome. Yet what if your child doesn't have Angelman Syndrome, but a condition with movement difficulties, is non-verbal, and contends with seizures? Well, there are plenty of other diagnoses that involve all three of these, so this sticker can be helpful for children that fit this category as well. Do not wait until you are in a wreck. We all hope not to be, but there is a saying from "Grumpy Old Men," that is appropriate for such a wish. Therefore, it is important to order this highly visible sticker, that can help first responders save time, and perhaps also save a life. Think about the Boy Scouts Motto, "Be Prepared." This falls right into line with that, and all it takes is a red light accidentally being run, someone texting while driving, or just a series of events to happen, that can disrupt everything in mere seconds. By ordering these safety stickers at http://www.etsy.com/listing/88725438/alert-fireambulancepolice-of, you can have greater peace of mind, and help out first responders when, not if that accident occurs.

That Extra Chair at the Christmas Dinner Table

2011-12-20T10:19:00.000-08:00

It is so hard to lose a child, and a lot of parents, are going through that right now. Losing a child happens to all people, regardless of who they are, what religion they are, or what condition their precious girl or boy had. Yes, it is 2011 and we are blessed to have modern medicine, and devices that do help prevent such a tragedy, but much like the sun rises in the east, and sets in the west, a child is going to die everyday. Make that many, and to those whom have recently gone through such profound sadness, my heart goes out to you. As the father of a child lost, I know that we handle our grief in different ways, but the result is the same. There's something missing, and no matter what, none of us will ever get over the loss of our children. Yet we shall get through it, and this time of year is particularly difficult.

That Christmas Tree is missing the presents of your little one. There is an empty chair at the table, where you used to watch the eyes, light up when you brought out that Ham or Turkey, or perhaps mashed potatoes or squash. It can be a crushing feeling, yet when you look at that empty chair, think of all of the empty chairs that are out there with you. True, you might not be able to see them, but they are there. If you could have wings or x-ray vision, you would see this is very much the case. It is my sincerest belief that all children go to Heaven immediately, that there is no waiting period, unlike the rest of us that might have an encylopedia set thrown at us. They are no longer suffering, it is us, and as parents that is our solemn responsibility. It goes against the grain for a child to die before a parent, that adage is so true. Yet, at the same time, our children are not in pain, not weeping, not going through the motions of "what if," and "why didn't I?" And that is alright, when you think about it. I am comfortable that my son is not the one in pain. Do I suffer every moment of every single day? Nope. There are tears, that cannot be denied. Yet there are also smiles.

The first Christmas was very difficult without Tommy. I do not know what this one will be like. There will be some tears, there have already been, but there will also be smiles. That empty chair will be there. Yet look at it, and think about your little girl or boy, and the happy memories that accompany the holidays. Be grateful for those moments of bliss, and while it is necessary as part of the grieving process to cry as necessary, also be thankful at the same time. To those who have recently lost a child, this is going to sound ridiculous. In fact, it might make you a bit mad, sad, a whole combination of emotions, but those who have been down this path for awhile, understand these concepts very much so. It takes time, each day does get better, and while there are setbacks and upward trajectories, the main thing is to hold the love of your child, and not turn it into defeat. Instead, carry your life with the painful lessons that you have learned, and turn them into acts of kindness to others that are going through hard times. You might be surprised, because while the pain never totally goes away, these acts help you and your human spirit carry on, until that day when called home.

Hipperbibs-Its Cool to Drool-"Stylin' and Profilin'

2011-12-15T10:22:00.001-08:00

http://www.hipperbib.com/index.html. Do you have a child with special needs, who you want to help with one issue? Drooling. Yes, for those who have conditions where this is an issue, how about some fashionable ways, of making the drool "cool," and also fashionable? Hipperbibs since 2007, has been empowering children and parents around the world. Its not only kids in the United States that are wearing these high quality, good looking accessories, but rather boys and girls from the" stiff upper lip" United Kingdom, the "I went to a fight and a hockey game broke out" Canada, or those "running from the bulls" in Spain. These are all over the globe, and it doesn't matter which country you live in, what condition your child has, but rather would you like your child to have a device that helps with drool, looks cool, and might have a chewy attached to it?

The owner of Hipperbib, Susan Winfrey, is an incredible, loving mother to Ian. He is a handsome young man, and like other kids with Angelman Syndrome, or other conditions such as Rett Syndrome, Mowat Wilson Syndrome, Dravet's Syndrome, Cebrebral Palsy, or anything else that can lead to drooling, each human being is valued. Each girl or boy deserves to be treated with dignity, and Susan and her loving efforts, have helped parents from a host of countries do just this. Whether its Brazil, or soon to be the Rock of Gibraltar, that's right, parents in Gibraltar, you do rock pardon the pun. You can get Hipperbibs, wherever on the globe you are located. These cloth accessories are machine washable, and they have snaps that allow them to be easily put on your child, along with the new Infinity bibs that are more durable than a Cadillac from "back in the day." Each one is affordable, hand designed and sewed, made with complete love and customized for your child's needs.That's right, even your teams can be represented. Wouldn't you love a Boston Red Sox or Dallas Cowboys, or any other team for that matter, on a bib? Starting out at $7.50, every ten you buy, there's one free. How often can you find that kind of deal? Keep searching, but the spot is hipperbibs.

From her family to yours, you can rest assured that at http://www.hipperbib.com/index.html, you will find a wide array, the selection of hipperbibs, chew products that allow your child to better concentrate on school and other areas of life, is a "one stop shopping" type of place. You do not even have to leave your living room, as you can order online, from the comfort of your couch. How cool is that? Read the testimonials and see for yourself, as parents of children with all conditions are more than pleased. In fact, they are thrilled, and just by going through the patterns, the designs, and the options, this is a way to pick up something that you and your darling child will love. The quality, along with the love producing these, and their price makes them attractive for any time of year, and climate as well, as you can have one that covers only a bit or more as needed. The folks at Chevy, Nissan, and Porsche wish they could have this kind of showroom, and there's no reason you should have to be hassled by a tweed shirt wearing salesman. Instead, there's no pressure, you just go on http://www.hipperbib.com/index.html and look around. Susan is always available for questions about these, and she is more than reliable. What you order you shall get, and she has been deeply touched by hearing how appreciative, her customers are of her dedication to such a beautiful cause.

The best part about Hipperbibs, is that you have a parent, who understands the shoes you are walking in. While Angelman Syndrome is what Ian has been diagnosed with, Susan's love not only extends to him and others with this condition, but anyone whom could benefit from products that help with drooling issues and chewing types of behaviors. That counts for a lot in this world, which isn't always easy, but it is more so to be connected with someone who's "been there, done that." Susan certainly has, and Hipperbibs is an example of how, 1+1=2 came to fruition. Love. This is a result of that, and she has a loyal customer base, family that has become family, for the reason that her heart and her products carry both of them at the same time. She could have just made a few designs, that would offer drool protection, but instead she has gone the proverbial "extra mile" in making so many, that parents from all corners of the globe will find one to fall in love with. Your child will look great with one of these, and her vast array of ways to help make them more fashionable, is exciting and does prove that "it is cool to drool." For more information check out Hipperbibs at http://www.hipperbib.com/index.html. Remember buy ten, get one free! These reversible bibs are made with love, and Susan's customers have become family.

Willi's Ski Shop in Fairfax, Virginia Gets It

2011-12-14T18:21:00.000-08:00

There are times that we all lose hope, that we all get so frustrated with what life has thrown in our direction. It can be anything, but a lot of stress can be relieved on the ski slopes. I would like to personally thank Luke and his staff at the Willi's Ski Shop in Fairfax, Virginia. While "Mother Nature," has been a pain this winter, not cooperating with those who love to hit the slopes, the Mgr and his staff don't "play with my emotions" like Smokey did to Big Worm in the movie Friday. No, instead they provide excellent service, and share a passion for skiing, along with being very interested in generating enthusiasm for epilepsy awareness. Luke and I have talked about the Suck Feizures version, that is hitting Big Boulder on February 24-26th 2012. The encouragement and his kindness have meant a lot, and while there's still not a ski lift to the store, there is a lot of just good people down here. These folks understand the love of skiing, snowboarding, and just the concept of being outdoors, and what it means in a spiritual sense.

A big hat's off to Luke and his folks, who are fine representatives of the sport of being "winter warriors." I have always been pleased, as has my wife with how they treat customers and provide excellent information on everything from ski's to a good jacket. Yet, what really makes the difference is their enthusiasm. It is contagious, and in a good way, as they aren't giving out the flu. Instead, they immediately knew of how helpful ski resorts were with paving the way for those with special needs or epilepsy related conditions, and they are very much a part of the process. This winter weather must arrive soon, because the ski resorts and those who just love to hit high speeds or crash into trees are, just waiting for this opportunity. God willing that shall happen soon, but I would like to thank the fine people at the Willi's for being bold, for not being stale like so many ski shops, and understand that this sport is more than just being on pieces of material. Instead, its about what comes from the heart, and they are kind to those with epilepsy and very supportive as well. Be sure to visit their location near Fairfax Circle, and get your ski's, boots, and perhaps that helmet to protect your chrome dome if that is an issue.

Happy Birthday Suck Feizures!

2011-12-13T04:17:00.000-08:00

It is a bit early, but I think we can pop out the champagne a bit, in saying "Happy Birthday" to Suck Feizures. This is a facebook group, that is more than that, it is a family of people whom have seizures, or love someone with them. Each and every single member of "Suck Feizures" does not pay any dues, as they already have enough in their lifetimes, and this will probably not be a 501 C charity, due to the fact that there are already established charities we can get behind. Whether it is the Vanderbilt Kennedy Center, Epilepsy Foundation, or others that are all four stars or higher in the Charity Navigator rankings, much work is to be done still. However, the first year has led to some exciting breakthroughs on Suck Feizures, and what started out on Dec 25 2010 is now 1370+ good souls, working together to battle seizures head on. Already projects have been completed, to help with research, make connections, and build a solid rock bottom foundation on what we can all build upon.

The folks of Suck Feizures are spread around the world, making up every background. Seizures do not discriminate, and neither do we. There is love, and that is how the war on seizures is being waged. We miss the casualties among the way, but yet we continue to stand tall, up front and center, even if there are tears coming down our faces. That is no sign of weakness, rather of a determination that cannot be bottled up, and it is the key to getting researchers the awareness and the funding that they so very much need. It is simply unacceptable, that in 2011, only 1/2 of 1% of U.S. medical research is devoted to epilepsy related causes. Morally reprehensible, and that is going to be switched to a much higher percentage, with our efforts and resilience. Many members of Suck Feizures have lost a loved one on the way, yet they continue to fight. Others contend with seizures that get in the way of them fulfilling their college or employment dreams, or have led to children being hospitalized for weeks on end. Yet none of these people is giving up, which besides the spirit that comes from up above, is proof of the relentless human spirit that just not know how to put the brakes on. There's no cashing in the chips, rather there is a "it is our now time" attitude, and indeed it is. We are now entering an era when social media, other technologies, and biology and medical advances are moving at blistering speed. These are great, but it is our responsibility to take the lead, and put a human face, our pain, all we have experienced, and lay it out good, bad, and otherwise.

2012 promises to be even more exciting for Suck Feizures. We are doing our first ski trip, that is going to be held at the Poconos Resort of Big Boulder Park in Pennsylvania. It is due to the dilligence of members, of partnerships with other causes, that events of this magnitude are possible. On May 27 2012 there will be "Epilepsy Awareness Day" at Hillsbourough Vineyards, one of Virginia's best rated wineries and our members and others shall be there that day as well. Also, a tour to NIH, in Bethesda MD is tentatively scheduled for this spring/early summer, and more events including guest sermons, television appearances, and radio station shows are in the works. There is no giving up. If you want to be part of a facebook group that is "lean and mean," yet shows love, passion that truly emanates from the heart, "Suck Feizures" might just be where you want to be. Yes, the name, the purple sweatshirts and the black t-shirts that say this might be a bit too much for some, but seizures have been too much for a lot of people. Its time we kick them to the curb forever, and one day Suck Feizures and other groups, will no longer have that name. Instead it will be "We Beat Seizures," and that day will be when we forgo the cheap champagne, drink the good hooch, and have a damn good cigar to celebrate a victory that so many have dreamed of. Yet, we must not rest on our laurels, we must not dream, as this is about results until that very day. Suck Feizures and Happy Birthday!

Vanderbilt Kennedy Center-The Angelman Seizure Research Project's Dream

2011-12-13T03:58:00.000-08:00

Did the egg come before the chicken? Perhaps. That old adage has been used to describe a lot of events in life, and it is time for children with Angelman Syndrome, to have the perfect medicine combination, that is going to stop them from suffering from numerous seizures, or worse. Death. That's right, its the five letter word that nobody likes, but it is a reality. It has happened to numerous parents of children with Angelman Syndrome, and it must stop right now. There are no words to describe this pain, that parents whom have gone through this, and there are more than we know, have to endure. Our hearts should be with them, and instead of looking away, we should look right at this topic.

"People die everyday." These words were mentioned to me the first time I did CPR on somebody, and I am grateful for them. I was shaken up afterwards, but the statement is true, even with our world class medicine. Yet, there will be no giving up, despite the tears, the passion, the questions, anything. Instead, there will be a continued climb, that will look like a stock quote that is doing well, with of course some proverbial bumps but a forward trajectory. Vanderbilt's Kennedy Center in Nashville, Tennessee is one of those places, that families with an angel should be grateful for. We are blessed to have a researcher with an angel, and a Angelman Seizure Project that is, a work in progress like all of us. Yet this team is working on something that isn't sexy, but rather practical. That is a medicinal combination, that will stop non stop seizures in Angels. There will be less milestones crushed, parent's won't be stressed out having to watch their girl or boy whom they love, having seizures for days on end. And those parents, whom have gone down the road of kissing their child before that coffin closes, shall never have to again.

How do you get involved? Simple. Donate to the Vanderbilt University Kennedy Center, through their online giving section. Here you will have to type in "Angelman Seizure Project" under other, which is going to eventually change. If it means a 10 hour drive down to Nashville has to occur, it shall, but regardless what matters is the work of Dr. Haas and staff, that are doing everything they can, even with limited funds and time. They must get what they need, and it is up for us, each and every single person, to bring them what they need. It is not an insurmountable goal, but rather a challenge, and so far its already one step closer with people donating to this most benevolent of causes, through the online site, hearing a sermon, wonderful, compassionate people designing shirts, buttons, stickers, and the Angel Quilt Project, that is both painful and beautiful at the same time.

We owe it to children with Angelman Syndrome, to help them not have seizures anymore. While there are a whole host of fronts going on, as this is a war, one must be the seizure angle. No more, no more. If we do not stand up, and stick to our guns, climbing together through this war zone together, than all those who have battled prior to us shall have fought for nothing. "Its always better to fight for something than nothing." While I forgot whom said that quote, it is accurate in this case, and we must continue, to not give up, to look at these angels whom we love so much, and on the multiple lines, do what we are doing. It is time for the school of the Commodores to get this medicinal combination down, so we can take the next step. There are parents crying today, hoping their child with Angelman Syndrome can stop seizing up. Other parents are so worried, "Is this the time?" Unacceptable this is, and for these reasons alone, it is imperative that we get the Vanderbilt Kennedy Center's Angelman Seizure Research Project, what it needs, now. This is our time, it is a moral obligation, and we must through the tears and the pain see this work bear fruit.

Volunteering: The Reality of Charities and Such

2011-12-10T10:47:00.000-08:00

The vast majority of people worldwide, believe in "service above self," which is something that all of us should be thankful for. It is amazing what connections are made at such events, and I am not going to name but a few charities that I have worked with/for, however it is put, that is semantics and nothing more. Each of these charities had different missions, but were to help others, support a cause, or cure a condition that countless amounts of people want. It is not time to discuss how many hours were put in, that is between God and I, and few efforts have been loud, but rather in the trenches. That is how work gets done, it is not glamorous, and I do not care if I'm speaking at an event, a chair on a particular board, or cleaning up balloons or having to tolerate Justin Bieber songs for hours on end. What matters is making connections, doing a good service, and leaving this world maybe a little bit better to the next generation. Perfect? Nope, that isn't going to happen on any realm on Earth, and there are a lot of things, that are simply out of our control, regardless of our position in life, status, income, etc, etc.

Charities do the best they can. Not all of them have the resources of the "big guns," such as Susan J Komen or the American Heart Association, two fine ones that are gigantic. When you get down to the "nitty gritty", there are only a limited amount of funds, and the key is being effective with your resources. Most charities do have paid staff, I never have been, and it is necessary, regardless of what size of your funding is. I have worked closely with paid staff of several organizations, and they do phenomenal work, and the key theme seems to be "quiet faith." They spend hours, and go far an beyond the 40-50 hour work weeks, that are already enough for any of us. These folks are called, emailed, and making constant connections 24/7, and we should be grateful for these passionate individuals, who's work is not always glamorous, and in fact can be quite painful.

Ducks Unlimited is the charity I am going to mention. It is a fine one, that I was on the board of a chapter for, and saw everything, from top to bottom. I had the key to all kinds of information, and was involved in planning events. Most of our fundraisers, were effective, for one reason only. They were at spartan places, often we would choose a church that a member had access to for free or a minimal fee, and our cost ratio with regard to our banquets, it was very tight. Even when we got steep discounts, the rate of return was not enough to sustain our organization. The amount of money devoted to advertising, logistics, and then other issues such as liability insurance, and other factors was astronomical. Considering DU has been around for years, I was shocked by the small amount made by banquet type of events. They were a lot of fun, and we had a great time. Yet, where we made our money, was through other sources. If we had just stuck to banquets, DU and other charities would simply be out of what they do in no time. They were good for publicity, and it was fun to party, there is nothing at all wrong with that. In fact, that is actually fun, but with regards to the cost ratio, it was atrocious. Our main source of funding, aside from members were businesses, other foundations that we had cooperation agreements with, and alliances that pulled funding together.

I have been mad at one point or the other at charities I have supported, worked with, for, etc. That is okay, it is passion, and that can lead to beautiful results. Yet the key is not getting angry longer than fifteen seconds. Okay, thirty seconds is fine. Then take a step back, a deep breath, and realize that no charity, foundation, organization, what have you is perfect. There's no such thing as a 100% score, but financial stability and a track record over years are important, as is solid leadership that has conducted numerous scientific experiments with this funding, via efficient methods. There are no easy answers, especially with regards to organizations looking for cures, whether it be the American Diabetes Association, the American Cancer Society, or any other. This becomes even more difficult when its broken down to no disrespect,"small fish," that must operate with diligence that dollar for dollar, they can equal out the playing field a bit more. The Angelman Syndrome Foundation is doing that, and so are others. The key is not playing a game of checkers, but rather of chess, in which you set up your pieces the best way possible even in these circumstances.

Suck Feizures Ski Trip 2012: Rocking the Purple

2011-12-08T00:53:00.000-08:00

Ski resorts were among the first large facilities, to incorporate and downright encourage, those with special needs to "hit the slopes." There are adaptive ski lessons at a lot of them, and they were vital, for the gains that families with a girl or boy with a big heart have today. I first want to thank them, because while I must continue the journey with a heavy heart, it is a joy to participate in the Suck Feizures Ski's 2012 trip to Big Boulder Resort in Pennsylvania Feb 24-26th 2012. It is going to be a joy to connect with folks met before, as well as others, and "red solo cups" are going to be a part of the mix. This is not a fundraiser in any regard, but rather an effort for and by loving parents, who either have seizures, or love somebody with them. There are going to be folks wearing beautiful Suck Feizures Ski's purple hoodies, as this color denotes epilepsy awareness. The folks at Big Boulder have been helpful, parents in this group have gone the extra mile, to make this event happen.

We shall fall and stand together this weekend. There will be some soreness afterwards, but it is going to be a lot of fun on the slopes. The Comfort Inn at White Haven, PA has been kind enough to work with a loving parent, to make sure the rooms could be affordable, during what is peak season. This is in addition to the willingness of the Big Boulder Resort and the Big Boulder Tavern, making it even more of a possibility for folks, to just get together, and have some fun. That is important in the battle against seizures, because while fundraisers are a necessity, coming together and falling with each other on the bunny hill is as well. It shall be done with love, together, and there will be a lot of folks "rocking the purple," and showing support to the 3% of folks around the world who regularly have seizures. This is even higher in the special needs community, and one in ten of us are going to have a seizure. Many lives have been lost, with regards to a condition called SUDEP, and the pain epilepsy has caused, cannot be measured on any scale. For those whom contend with it, or love someone that has it, each time we go down the slopes, we hope to make you proud.

Would you like to go? It is a public event. You can either go to the facebook group Suck Feizures for more information. Nobody bites there, unless you want us to. Its a group of friendly and funny people, that despite years of heartache and quite a few whom are missing someone due to seizures, just do not understand the meaning of quit but rather of do. Our name is harsh indeed, but seizures are not laughing matter, and that is why we must confront them by helping the charities that so far have been, and continue to ramp up on those efforts. Those are ongoing, and there's much more to come down the pipeline, including a winery Epilepsy Awareness fundraiser event, and also a tour of NIH.(National Institutes of Health). So yes, this weekend is about fun, so please do roll out on Feb 24-26th 2012. In addition to skiing, tubing, snowboarding, falling on our butts, there's going to be arts and crafts, and ice cream social, a free raffle, and fun for all generations at the hotel, and of course the party on Saturday night. A room at the Big Boulder Tavern has been provided, with a view of the resort, a live band will be playing, and a lot of red solo cups, that's right, Toby Keith style, shall be part of the itinerary. Designated drivers are in place, and the key is to have fun, although getting up the next day to ski is going to be interesting. For more information, check out Suck Feizures, and let's rock the purple while finding that cure.

Dr Elizabeth Kubler was Right. Steve Jobs, his Batting Average was High Too.

2011-12-06T08:53:00.000-08:00

"Nothing happens by coincidence." Truer words have never been spoken, and these were by Dr. Elizabeth Kubler Ross. "Biology and technology are going to come together, in the ways that my generation was introduced to computers, to develop cures for a whole variety of treatments." Steve Jobs. So how on earth can these two polar opposite personalities, who have passed away to God, be somehow connected? Steve Jobs was known for throwing tantrums, calling people multiple conjunctive adjectives in one sentence, while Dr. Ross was bringing the compassion of end of life care, and an approach to dying to so many of gentle means. The fact that they are both dead is not part of the first part, although today I thought about both of them as I sat by my son's gravestone. In the rain, the pain did not go away, but neither has the hope.

I first want to congratulate FAST, the Foundation for Angelman Syndrome Therapeutics.(http://www.cureangelman.org/) They are bringing so much excitement to families who love someone with Angelman Syndrome. Their compassion is very much appreciated, and their zeal and quest for a cure is admirable. On December 10th, that's right, next weekend, you can watch parts of the recent FAST gala on NBC. For others, youtube or other sites might be helpful in this. At the same time, the ASF(http://www.angelman.org/) , otherwise known as the Angelman Syndrome Foundation is doing exciting work. There is going to be some thrilling news in January, that is going to pardon the pun, rock the "foundation" that all of us have ever believed. January is going to not be a cold month, but one full of warmth, and passion. With that business aside, I'm going to share a personal story, and date myself a bit, more than the few grey hairs I have left on my head. Grey hairs, are truly a bald man's best friend.

Think about what Dr. Ross said about "no coincidences," and what Steve Jobs said about "Technology in Biology." Keep those in mind with the work of both the ASF and FAST, but also in regards to our war on seizures. If seizures were a person, there certainly wouldn't be anything left, as parents, family members, and those who have them, would put a foot up their ass, to say it nicely. Yet that time has come, and a lot of it can be traced back at human history. As polio was cured a long time ago, and other ailments along the way, we no nothing of value happens overnight. Yet when you look at history, with a long lens, let's look back to Apple Computers. That's right, Steve Jobs's company. I was remembering playing on the Apple IIC, back in the mid 80's, and how baseball used to be "press a for hit, b for bunt, c for slam, d for stand". There were no images, just words saying what happened, in that horrible green font. Steve Jobs would use a stronger statement, with a certain four or five letter phrase. How about that Odyssey system I used to play on, a precursor to Atari? The squares that represented racing cars were great, sarcasm intended. How about that clunky cellphone that was the size of the nuclear football, that has to chase the President of the United States around, or having to connect to a phone to get on the net? Remember those wait times? Good luck with fast streaming media on that.

Now, medicine is getting a boost, at the molecular level with technology. Computers, not by coincidence, are now responsible for much of the research, and are a helpful tool to humans working relentless hours, for a cure for conditions such as Angelman Syndrome and seizures. In fact, this work is very much related, and is the key to it all. Computers have allowed for the unlocking of DNA sequences, and various mysteries such as therapies that are going to serve all of humanity. The best part is, it is for a reason. Do you not think we are getting ahead quicker than ever, has no reason? Of course not. "No coincidence," Dr. Ross is completely accurate. There is a reason Jobs had such a "high batting average." No coincidence on that either. Now it is up to us, each and single human being, to now march forward to these cures for Angelman Syndrome and seizures, hand in hand, because the gene associated with this condition holds promise for other conditions, including many on the autism spectrum.

My son is missed. That rain led to more of it, that was released from my eyes, but I shall not give up. Not until my very last breath on earth shall I, and today I am even more hopeful that seizures are going to be cured. It took a prayer that led to a call, as the answer that I've been searching for, has been discovered, and soon will be made for public consumption. January 2012 is going to be a month to remember, as those of us in the Angelman Syndrome Family, and all other conditions that are on the autism spectrum, and so many more, are going to be very pleased with the news that is forthcoming. It is too late for many of our children, our loved ones who have been affected by seizures, and those whom have had Angelman Syndrome, and its host of other components that lead to sickness, injury, or death. Yet you have all remained steadfast, united, and dedicated to the cause. For that reason alone, along with what Dr. Ross and Steve Jobs have proclaimed, we can soon celebrate the future that holds more than we could have ever imagined. It is a beautiful one, and now is the time.

A Message to Parents Missing Their Little One During the Holidays

2011-11-30T05:43:00.000-08:00

It is so painful to be by the Christmas Tree, or the Menorah without your little boy or girl, isn't it? That empty chair at the table, the hole in your heart, that just seems to always linger with you, not quite leaving you at peace. Your child is, but your soul is churning with all of those memories, both good or bad, in the time that you shared with them. I am a little over two years since the passing of my boy, and I am not going to run away from Christmas celebrations, but it is hard to think about, "what if." Yet, the harsh reality is my son is gone, and there are so many other people, that are in the exact same position. They are hanging up Christmas Ornaments that their child loved, or perhaps was made for them, by someone special, such as a grandma or grandpa. You dread pulling out that box, with those decorations in it, knowing your heart is going to skip a beat, and the walls might just come crashing down upon you again.

Yet they don't have to. Those tears are fine, and if they are needed, they must be shed. At the same time though, its up to you to find what makes you satisfied. Is there such a thing as complete happiness? Last time I checked, nope. There is satisfaction, and this comes from several sources. One, is are you content that you are making a difference to someone else's life? If you are, then you should be satisfied, and it doesn't have to be anything big at all. During the holidays, reach out to someone in need. It could be as simple as giving a homeless person a sandwich, putting a couple of dollars in those red kettles that appear at every corner, or just letting another kindred soul know that you care about them. Two, think about those memories, but think about them in this way, would your child who you miss so much, want you to suffer year in and year out during these times? Honestly. Dig deep, reflect upon this for some time, but I am betting, and not being a gambler I don't roll the dice, your little boy or girl, wouldn't want you to constantly be in pain during these holiday periods. Instead, focus on the joy that they brought you, and share it with others. That is the ultimate gift, and it is satisfying both for you, and the person that you've touched through the legacy of your child.

Christmas and Hanukkah, and other holidays have been overcommercialized. Its okay to be irritated about one thing, the stores having related displays up after Halloween. The next time you see Santa Claus on November 1st, as part of a blow up display full of that hot air, deliver a knockout punch :). Its a tough period no doubt, but hold on to those happy memories. Yes, there is an empty chair, and empty spot, where your little one used to be there during these special times. Yet they still can indeed be, cherished moments, and this year while I put my son's decorations up on our tree, there was a lot of thoughts among family members. They can share their's if they like, and I hope that they will. When looking at Tommy's decorations, I now know he is with our loving God, and that while its okay to cry, at the same time, its important to remember what he did, and let his brother and others know about what he was able to accomplish with his time on Earth. That alone, is able to bring up some joy, and yes there are tears, but most of them are of the festive variety.

The Day my Boy Died. The Music Didn't Stop, The World Didn't Stop Moving. Our Hearts Skipped a Beat.

2011-11-21T15:43:00.000-08:00

Having to do CPR on your own five year old son is unfair, but it has happened to me, and countless other parents, whom contend with epilepsy related conditions. I do not want your sorrow, rather what I desire a cure, so that no other parent, shall be placed into this situation that could only best be described as a parent's worst nightmare. It is true that my Tommy's heart stopped, yet cars continued to fly down the highway, as the ambulance we rode in, made its somber ride to an ending that was already written. Music continued to crank out of the angry commuter, going in the opposite direction, probably irritated that an ambulance was further delaying his trip home after a day of work. Tommy's wings were gained, and the pain of our family, friends, and so many who knew him brought so much anguish, crushing defeat, and an emptiness that no one should go through.

No parent should have to receive a death certificate of their child. I've got Tommy's in a closet in our house. Its not looked upon, because while I know he is gone, as the coffin closed on him and all of his happy smiles and laughter, his spirit lives on in all of our hearts. His younger brother, will know all about him, the picture of his hand print brings both tears and smiles. It is proof that he was and still is a part of our lives, and plenty of visits to his plot under a tree, remind us of his passing on that terrible night of November 2009. Sometimes it feels as if it was yesterday, but most often its as if, this was from another lifetime. There's before Tommy, with Tommy, and after Tommy, but yet his legacy carries on every single day. That twinkle in his eyes, and even though he never said a word, you could see the joy in his expression, that was nothing short of beaming when he was happy. His arms would flap up, which we called "doing the Tommy," and Porky certainly walked out strong, standing tall and walking unassisted.

What's the future going to bring? I don't know other than, it will be carrying on, and not giving up ever, for a cure for seizures. There have been so many children lost to seizures, so many grieving parents, or so many young adults who've never woken up, after experiencing a SUDEP event. As we close out Epilepsy Awareness Month, its important to learn new information everyday, whether we are a doctor, or someone who just wears a white coat with a stethoscope. Your position in life does not matter, nor does your ethnicity, your age, your religion, but rather your character. Each human being is to be valued, and you have each and every chance to make a difference in this combat, which is what we are engaged in. That's right, there is a war on seizures, as just like soldiers have to endure, there are casualties, whether it be milestones delayed, cognitive abilities impaired, or the worse of all death. We are all going to end up in a coffin one day, and that's okay, since the old joke of "don't be so serious, no one gets out alive" is so very true. The reason that some groups have you sit in a coffin, is for a good reason, and its not meant to be pleasant. Rather, its to say, "You have a limited amount of time, to accomplish your life's mission."

Sometimes its hard to figure out what that is, but listen to your heart, and consider times for reflection and prayer. You aren't going to get zapped by lightning to understand what this is, unless you are out on a boat in a lake during a thunderstorm, but rather the hints are subtle. The wind that blows over my son's grave, and jostles the glass decorations hanging off of the tree, is a signal of sorts. Its peaceful, and while many tears have been shed there, the sound is tranquil and is a reminder that there are no guarantees in life, except being able to be of significance to another human being. Tommy was able to do that, even limited by his Angelman Syndrome condition, and inspired a whole family, that didn't just have his last name. We each have unique God given talents, and we also have things that we might not be able to do. That's okay, someone else can help you with "the slack." That's why we are connected in so many ways, and now with the advances in social media, technology, and medicine, now is the time for a cure for Epilepsy. I was stunned to learn the other day, that less than 1/2 of 1% of U.S. government medical research, goes to this condition, which affects one in ten of us in our lifetimes.

It is time for that to change. You got it, the time for the music of epilepsy being relegated as a second class concern, is no longer going to be that anymore. It is going to require pain, even more than all of us who have epilepsy, or have buried a child or loved one to it, have already experienced. Get ready to make a stand, because silence or waiting for a handout, is a defeatist strategy that has never won any front. Whether it be the Civil Rights movement of the 1960's, or the overthrowing of dictators who treat their fellow countrymen as nothing but pawn pieces, this is the time for all of us to move into the checkmate position. You can be an element of change, a harbinger of developments, step by step. Its not going to be one of us, but rather all, and with our connected approach and dispelling of ego's, we can get it done. For you Tommy, and all whom have gone to God far too soon, and to all whom experience seizures or love someone with them. We will succeed. The world is going to stop moving, for our strength in numbers, and the commitment of our hearts.

Big Boulder Resort in the Poconos, PA Feb 24-26 2012: Suck Feizures Trip

2011-11-15T07:03:00.000-08:00

Suck Feizures. Yes, that name is harsh, but for those who have lost a child to seizures, watch their little girl or boy go through hundreds of them a day, or contend with them on a daily basis, that's not too strong at all. In fact, it might be too kind. Yet those who deal with epilepsy directly, which all whom love someone or have this condition do, deserve nothing more than to find that cure that we all know is possible. Look at how quickly technology, social media, and medicine are coming together right here, and right now. It is meant to happen, and in order for that day when we can all pop the champagne, and fire up those high quality cigars, we must first organize even further. That's right, just like combat, although this one is of love, its time to put some boots on the ground.

February 24-26th 2012 that shall be happening, at Big Boulder Resort in the Poconos area of Pennsylvania. They have been kind enough to help the facebook group "Suck Feizures," that supports each other while also funding research against seizures, get out and about on their beautiful slopes. 3% of the world's population deals with seizures, and one in ten of us will have one in our lifetime. That's a lot of people, and sitting by idly waiting for a handout, is not in the best interest of those with those medical condition, and is certainly not the attitude of Suck Feizures. Instead it is one of determination, of love, and an unyielding resolve to make the next generation never have to face the pain of epilepsy. Its time for that word to be put in the history books, and God willing it shall be, as we do not give up, ever. Big Boulder Resort has been more than helpful in getting a lot of folks together, many whom are severely disabled with conditions that have epilepsy as a component, and making this event possible. It is with profound gratitude and thanks, that several hundred people, many of whom haven't taken a vacation for years, and want to meet others on the same path, shall be able to enjoy such fellowship on the slopes this weekend.

Are you going to be a Big Boulder Resort in Lake Harmony, PA this weekend? Rock the purple, by wearing a hat, jacket, or perhaps a scarf of that color. That will let so many, whom have never given up, even as milestones and multiple hospitalizations have been required, know that you stand with them. The Suck Feizures Group will be staying at the Comfort Inn, at White Haven, PA, which has also been helpul, and celebrating at the Big Boulder Tavern on Saturday night. On Friday night, we shall have a "meet and greet" ice cream social, with children and family friendly events, all generations are a part of this weekend, that will bring a lot of loving souls together, who shall see that they are not alone, they have family that they never knew they had, and that together we shall through all of the tears, also have some smiles along with the hope that we are doing the right thing. Thanks to all in Suck Feizures, whom are making these activities, including a free raffle possible, and for the kind folks at Big Boulder Resort for starting the first of an annual event. Let's go rock the purple!!!!

http://www.dcski.com/articles/view_article.php?article_id=1311&mode=headlines

The Road to Shambala: Toby Keith and an Old Song with Meaning Bring Cheer

2011-11-15T06:40:00.000-08:00

"Wash away my troubles, wash away my pain
With the rain in Shambala
Wash away my sorrow, wash away my shame
With the rain in Shambala [...]
Everyone is lucky, everyone is kind
On the road to Shambala
Everyone is happy, everyone is so kind
On the road to Shambala [...]
How does your light shine, in the halls of Shambala?"

Toby Keith is certainly a man of strong opinions, and his country music, seems to be either loved or disliked, with little in between. However, there's no denying his talent, whether its been songwriting over the years, or that voice of his that is so very distinctive. While I'm still waiting for him to do a cover for "My Maria," because of that voice, he recently put the cover of "The Road to Shambala" on his Clancy's Tavern CD Deluxe Pack. I had never heard of this song, but instantly fell in love with it, especially on a spiritual sense. While singing along to it, I had the feeling that this had more meaning than the words, and upon doing some research, that is indeed the case.

There's a lot of controversy what Shambala is. Whether its from Buddhism or some other form of religion based out of Tibet, or from a Sanskrit background, it's "all good." The main thing is you can feel the love from this song, and its much like faith, in that God wants us to find happiness, even though we are certainly challenged every day. In fact, sometimes every minute. To the poor motorist who had to sit next to me while singing along, with my voice that would get kicked off a church choir, I apologize to you. Getting caught in the moment, those spontaneous times of joy, this song seemed to bring them with playing it, even stuck in traffic that was moving at less than a mile a hour. What's your joy going to be? It can be anything, and the key to finding it, is knowing what makes you happy, and just enjoying it for what it is. This doesn't have to be something fancy, like an all inclusive vacation to the Carribbean, but rather what's in your heart.

Each of us, has to face an abundance of challenges in life. Its what we do when faced with them. All of us have pain, all of us have joy, and all of us have in between. Yet through faith, anything is possible, along with putting on your shoes the right way, and just enjoying each day regardless of what it throws at you. Its how you "soldier up," that determines the outcome, although of course there are times when we don't have our hands on the steering wheel. Yet, even in those times, its our strength of character, the human spirit that is no doubt resilient due to a loving God, that matters the most. Along with a poor commuter, who has the patience to put up with a bald dude who can't sing a note, finding so much power in a song on the back end of a CD.

November Epilepsy Awareness Month: Rock the Purple

2011-11-11T02:17:00.000-08:00

If someone had told me years ago, to wear a purple shirt, I would have laughed at them. Why would I want to look like Barney the Dinosaur, that traumatizing kids show entertainer, who I am tempted to run over with my car if he ever waltzes across the highway? The responding officer would say "Didn't you try to avoid this?" "I did." "Then why did you go four lanes across the road to hit him?" Yeah, the lack of skid marks in the right direction in that case, would probably have me in the pokey or worse for a long time.

Unlike Barney, and that horrifying voice that I hope is used for the military's psychological operations division, purple is the color of epilepsy awareness. Each November is the official month, as people with seizures, or who love someone with them, is wearing this color or a ribbon for this purpose. Funding is so vital to this cause, and that same one that is so very close, to so many people's hearts. There has been so much pain, whether at an emotional level, or with regards to productivity. Along with so many others, I have lost a son to seizures, and to bury your own little boy, changes your perspective forever. You are damn right I will wear purple, not only in remembrance of him, but thinking about the folks whom are contending with seizures right now. 3% of us have seizures on a regular basis. If you are in the United States, that is 9 million plus of our fellow citizens. Now with seven billion folks on the planet, just announced this past week, the number of people whom are dealing with them, our brothers and sisters, we must find a cure.

That's what the purple is about. According to the National Epilepsy Foundation, less the 1/2 of 1% of U.S. government medical research, goes to seizure research. I was startled by that number, considering the amount of folks, that deal with this, and also how lab work on this subject could help with other medical issues, such as Alzheimer's and Parkinson's. It sounds like all of us in the Epilepsy Family, aren't get our fair share of the pie. I find that low number to be disheartening, and while thankful advancements have been made, we still have a ways to go for a cure. If the folks at NIH(National Institutes of Health) and other groups got more government funding in this area, the possibilites are unlimited, and not only those who deal with seizures, but these other medical conditions could also march forward as well.

Right now there is a mom, who's been up all night with her little boy, who's been having seizures all night long. There is also a father, with his little girl, cradling her while she seizes up non-stop, stressed out beyond belief. They are our family members, friends, neighbors. Why not give them the help they need, by making a donation to folks like the National Epilepsy Foundation, going to their walk each March, or at least wearing a purple shirt, a ribbon, or making your facebook profile purple? Its up to all of us, to show purple as a way of saying, "I count, and so does a person I love that deals with seizures." This November be sure to wear it, because while it is too late for my son and so many others who have buried their cherished child, this is our time and our chance to finally show our compassion by wearing purple. Let's get the U.S. Government, and others to wake up to our plight, because we cannot afford to lie dormant, and expect action to move without us greasing the wheel.

The Angel Quilt Project-Help Parents on The Rollercoaster of Agony(Angelman Syndrome)

2011-11-07T05:23:00.000-08:00

Its so painful to lose a child. Most of us will never have to go through this ordeal, but a few of us will. This could include a young lady just being born right now, a high school boy playing a game of basketball, or a mother and father who are taking their child with Angelman Syndrome to the bus stop for school. Growing up, I had no idea that my son Tommy would be diagnosed with that condition, and his passing came as a complete shock, as it was from a seizure that not only stopped his heart, but the hearts of all whom loved him. The pain is immense, and from a personal perspective, I not only felt pain about losing my boy, but also for my wife, parents, mother-in law, uncles, aunts, friends, people who worked with Tommy that not only included teachers, therapists, bus drivers, and so many more. He had a bigger family than we ever thought of, and his funeral service was amazing. Here was a young boy who never said a word, inspiring so many, and by the grace of God he walked tall the last week of his life here on Earth.

Right now parents are in grief. They miss their children. Angelman parents are an amazing group of people, and to get a diagnosis of this condition(partial deletion of chromosome 15) hurts a lot. A lot of dreams are thrown out the window, yet new ones emerge. For more information about Angelman Syndrome, I cannot recommend enough visiting http://www.angelman.org/ (The Angelman Syndrome Foundation), or http://www.cureangelman.org/ (Foundation for Angelman Syndrome Therapeutics). Yet it is a double dip of pain, even more worse is the loss of an angel, as these kids are known, to an accident or a seizure. True people die every day, but when it involves a cherished child, its a thousand times over. Its as if you have died yourself, and the road of grief never ends ever. Yet it can be eased. There can be less bumps, even as the tears come flying at a rate unprecedented, and your body pushed to the limits, as you ride a cascading roller coaster of agony.

http://www.facebook.com/pages/The-Angel-Quilt-Project/267961783227848. Please go to this facebook endeavor, called "The Angel Quilt Project." Its love through quilting, and families around the world, who have lost a child with Angelman Syndrome, will receive a quilt with their beloved child, surrounded by angels whom are on Earth, who haven't gained their wings yet. One day, God willing all of us shall, but until then, the least we can do is show these parents that they aren't alone, that there are others who love them, and this is faith in action. Angelman parents are making these quilts, and then delivering them to these parents. If there was a musical equivalent, go see Darius Rucker's, pictured above, "Music from the Heart" video. Its on youtube and all sites on the net, just google it, and watch him perform with children and young adult from Vanderbilt's Kennedy Center. Proceeds from these quilts, also help this Center's Angelman Seizure Research Project. You are not only helping a family in grief, you could very much so be preventing another, from experiencing such pain, such anguish, and a lonely road that no one should have to go down on. You'll be doing your good turn, by even liking the Angel Quilt Project.

How do you do that? Go to http://www.facebook.com/pages/The-Angel-Quilt-Project/267961783227848, and click "like" on that page. Look at it, and see what loving quilts have already been designed and delivered. See and feel the compassion there, as it is kindness in every regard. If you make a $10 donation, you are helping with one of the patches on the quilts, or if you are able to, just spreading the word about this cause is more than helpful. All of us are going to die, that is unquestionable. Yet what do you want to do with your life, is the key question that needs to be answered. A lot of these people who are receiving quilts right now are in profound pain. A young lady being born right now, a high school boy trying for that three point shot, a mom or dad with their kid looking at their yellow bus that's taking their angel to learn new skills. These people need your help. You may not know them, but they are out there. This effort is able to help people suffering now, and might just be one of the keys to preventing others from similar misery. Do your part with the http://www.facebook.com/pages/The-Angel-Quilt-Project/267961783227848, and experience love and bring it to those whom need a lot of it right now.

A Loving Family, the Joseph Gomoll Foundation, and Dierks Bentley: Help Defeat Seizures

2011-11-04T07:28:00.000-07:00

There is no denying the sheer amount of people that contend with epilepsy. Some have a few a day, or a maybe once a month. Yet there are others whom have hundreds of them a day, and each person who deals with this condition, has a whole host of challenges, in addition to all of the other ones that we must navigate through on a daily basis. Epilepsy makes the sailing more difficult, but those who deal with it, are amazing individuals who are brave, and not willing to give up on a cure. Others have faced this condition in painful ways as well, as it is not only the person who has these seizures that suffers, but also those who love them. It is even more so, when it involves a child. To lose a child is the worst pain a parent can ever go through, and that is what brings us today, to the compassion and kindness of the Gomoll Family, parents Mike, Nory, and children Julia and Sam. They are here on Earth, while their son and brother Joey, has his wings in Heaven, missed by them, and who's lives were touched by this handsome young man.

http://www.joeyssong.org/dierks-bentley/. Go here and learn Joey's story, and help this family, lend a hand to those who still deal with seizures on a daily basis. They are enrolled in a contest that Dierks Bentley, a kind man and great country singer, is involved with about what "home" means to you. From watching this video, I have to say that their view of home is a beautiful one, but its up for you to decide what it means. Their pain is immense, but yet they refuse to give up, and while they are grieving, they have put this sadness to good use. They are giving back, helping others, and with heavy hearts as a family moving forward, to make sure that Joey's legacy continues on. That would be through a CD, that will raise money for this foundation, that helps epilepsy relate groups find a cure, which is what is needed. Joey's brother and sister are right, "love endures," and with each vote, that can further be the case at the site listed.

Please, go and watch this video. Be involved by voting for this, and by making this family's pain, at least eased a bit, knowing that we are behind them in every regard. Father Mike is so right, "the new normal," because while he and all of us for that matter cannot rewind time, it is what we do with pain, and how it is turned into love, that can be beautiful and help others. We each have only a certain amount of sand in our time on earth, it could be five years like Joey, or one hundred like George Burns. Yet, its not the matter of time that matters, rather it is what we accomplish in it, and how we continue the legacy of our children whom have fallen, or loved ones who have made an impact that does. Mom Nory, Dad Mike, Julia, and Sam, I am proud of you, as are so many more. You are proof of Gods love, and of the strength of the human spirit, that resilience that says "forward march," instead of retreating backwards. Years ago, General Patton's "I don't judge a person by how low they go, but how high they bounce back" could very much, describe the bravery that your family has shown.

Thank you for that. You have already inspired so many, and Joe's legacy lives on. You are helping countless people, not those across the United States, but around the globe. For those whom would like to vote, all of the information is at http://www.joeyssong.org/dierks-bentley/. Let's make this happen, because while we cannot rewind this family's pain, we can assist them in getting through, not over this, along with helping those whom contend with epilepsy. This is a very touching video, and I am not ashamed to admit to it leading to tears, but also generating a further level of resolve, to continue to fight for a cure. This family is going down a painful path, but they are taking the right direction with their feet, but more importantly their hearts. God bless you all, and to all who would like to be a part of their love, go to http://www.joeyssong.org/dierks-bentley/, and spread, spread, spread!

Steve Jobs "Oh Wow, Oh Wow": God's Love and Our Mission in Life

2011-10-31T17:28:00.000-07:00

There's no doubt, that Steve Jobs was an amazing man, who's influence is going to last a long time. That's right, you can call him the "Einstein of Technology," because while he didn't invent it, much like Big Al did with Physics, he improved it and brought it to the masses. While both were controversial figures in some regards, Jobs was able to turn Apple into a proven commodity, made computers user friendly, along with changing the music industry and how special needs children are able to communicate. Successful, there's no denying, and one could also say he was driven. The past week there have been a lot of accolades, rightfully deserved, but Steve Jobs despite being put on a pedestal of sorts, was a human being just like you and me. That's right, an imperfect soul, who with his intelligence and competitive streak, was able to be a name that all around the world know.

He's also an example of resilience. Fired from his own company, he certainly made a comeback with devices like the ipod, iphone, and ipad. His obituary was revealing for such a private man, because in his last moments of life, he looked at his family, and beyond them saying "Oh wow, oh wow." What does that mean? It can be left open for interpretation, some might say it was his brain's lack of oxygen or braincells firing down, but I believe in full conviction, that he saw "the other side." Its up for you to infer what this means, but plenty of hospice worker's can attest to this. Patients who are not drugged talking about events with relatives that no one until later knows about, or glimpses of Heaven, as outlined by an author whom wrote a beautiful and compelling book on this subject. She was a nurse in a hospice, and while I believe in a higher power whom loves us, its up to us to make that decision, and live accordingly.

I am, not as smart or ambitious as Steve Jobs. Nor do I have his business saavy, nor obviously his expense account, as I drink my "Generic brand coffee," or "Mystery Meat" from a box. Yet I am happy. Even with the loss of my boy almost two years ago, from an Angelman Syndrome related seizure, I am ultimately satisfied. Does this mean that I wear a "Joker" like expression, that Jack Nicholson had on his face years ago, in the original Batman? Nope, but it means being content that my boy is with a loving God, who has certainly challenged our family, but so many others as well. "Squeeze but doesn't choke." Find me one religious text, that says that life is going to be simple, or fair. There's plenty of time, feel free to go through the Bible, or any other book trying to find such information.

Life is a struggle. There are good days and bad, but it ultimately comes down to what do you want from this life? As we approach the two year anniversary of the night that my boy went to Heaven, a lot of people have said my actions are heroic. They are not. I am merely a simple man, a father who made a promise after meeting a special man after a rather angry prayer, who wants to find a cure for seizures. Other than that, a day of fishing, a good bike ride, or just enjoying a trip in the woods is all that really matters. The Vanderbilt Kennedy Center Angelman Seizure Research Project, and other epilepsy related foundations, are severely below the funding they need for a cure. That's the next logical step, because while efforts have made a dent in the pain of those whom are affected by them, whether its generalised epilepsy, Rett Syndrome, Mowat Wilson Syndrome, CDKL5, or Angelman Syndrome, seizures still affect so many people's lives. They sap their productivity, make their lives more difficult, impair cognitive abilities, cause ambulance and ICU visits that have parents right now sitting in a chair by their little girl or boy's bed, wondering, crying, questioning. These parents are stressed out beyond belief, not sleeping, having to contend with the struggles of life that are already challenging to anyone, and have what Harry Truman so eloquently described as "having a barn fall upon him," when being told about having to succeed FDR on his death.

Each of us has a limited amount of days. Its up to us, what do we want to do with them? Sometimes its good to just "kick back a bit," or recharge the batteries, before facing our next battle. I wish that I could say that seizures, were a one shot magical pill, and voila they just disappeared. There are millions of people around the world, that would be thrilled by such news, but we aren't there yet. However, I am convinced, that with more churches and other faith based institutions, folks who want to walk the line, and stand up proud, convinced that God's plan for them is to knock seizures out of the park, we can get this done. Before Tommy's passing, I had no idea that I could do guest sermons, or go to businesses, and approach them about how to get involved. Yet, with prayer and guidance, and making the right connections, a starting line has been established. I don't know how this is going to end, its not up to me, but what I can control is the resilience of "Brother Bill," who's valuable lesson on my greatest day of pain, is that very value that we each have in our hearts.

The human spirit is remarkable. We are kicked, broken, and beaten in so many ways. Yet we continue to stand up. I miss Tommy everyday, as other parents who've lost their children, feel the same way. It is unfair, there's no denying that, but its up to them to ultimately decide, A. Do I just be miserable and live out the rest of my days, or B. Do I take the painful lesson that I've experienced, including placing the dirt on their child's grave, or spreading of their ashes, and get through, not over, and put on some boots and make something happen? Each person has this spark, this divine love that has the endurance to go the distance, just like how Albert Einstein and Steve Jobs had the brains and ambitions to be so prominent in our lives. True, we might not make the newspaper, become famous, or rich, but by God we can claw through the trenches, and come out champions, with the pain as the motivator to do the right thing. November 2009 is the month my Tommy passed away, "oh wow, oh wow." Its also the month of epilepsy awareness. Coincidence? Perhaps. Yet look at all of the connections in your life, and at the sky on a clear night, and rarely is anything due to mere chance. Its up to each and every single one of us, right here and right now.

A Special Needs Diagnosis Changes Things, and Here's to You Dad's

2011-10-29T18:18:00.000-07:00

It is so devastating for a mom, dad, grandparent, brother, sister, cousin, or a family friend, to hear that someone they know has been labeled "Special Needs." This is quite a large wheel, considering the amount of conditions that fall under this, so imagine a whole bunch of spokes, that is similar to the autism spectrum. Obviously, we shall require a bigger wheel that the 275-70-18 that goes on a pickup truck, and a monster truck tire might be appropriate in this case. Us guys love those vehicles, with their powerful engines, loud sounds, and ability to crush cars with a single leap. Yet what are we supposed to do, when our souls are? When a doctor tells us, your little girl or boy isn't going to say a word, is intellectually disabled, or may never walk?

Having been in those shoes, that is one of the most painful events you can go through. All of those dreams, of seeing your little one play baseball, or to go fishing and hunting, are just thrown out the window. Your watching your child grow up to have that sneer you do, perhaps that sense of humor that had you end up in the Principal's office on a regular basis, that passion for the outdoors or watching a football game, are just gone. Now your reality is one that sucks, point blank, and for sometime its going to. Yet, its up to you with what you want to do with these words. The best thing you can do, the very essence of a man, is to take your lumps, and support your girlfriend or wife through these painful times. At the same time, realize you are suffering too, and that its okay to cry, it is alright to ask others for help, and also there's something to be said about "taking a step back."

You've been given a bleak forecast, but you haven't been given a death sentence. Right now, even though these dark clouds hover right around your head, keep this in mind. This is beyond your control, and the breathtaking speed of medical and technological advances, offer a lot more than previous generations could ever have. Groups on facebook and elsewhere are taking off, regardless of the condition, and your child is much more likely to be accepted by your community than in years past. We have come a long way. Is there still more to be done? Of course, but you can be a part of that change. So what about the baseball, the chances to land that Largemouth Bass, or the hunting trip for a big buck that will be the toast of your days?

Some of those may be possible. Adaptive sports are becoming much more popular, and seeing a special needs child smile, at a fish is a definitive possibility. Is this ideal? Nope, but its better than not happening at all. You might be surprised, as you can find activities that you will love, that your little girl or boy will. A lot of special needs kids love water. How about a day of swimming at the pool, or even in the ocean? Those are always possibilities, as are outdoor excursions. Many amusement parks and other places, such as ski resorts, allow you to go first in line, and to ride attractions for a second go around. Due to legislation like the Americans with Disabilities Act, and also the compassion of many, there are more opportunities than ever before for Dad's of special needs children.

You are going to feel the crushing of your soul, when you get the diagnosis, but it is my hope that you shall have some reasons for a smile as well. Its going to take time to accept what you are contending with, because I will never forget looking at my son Tommy's eyes, and thinking "those doctor's don't know what they are talking about." Yet they did. Their tests were right, and Tommy loved playing in the Chesapeake Bay. Those days were full of joy, and he smiled on the docks, as I attempted to catch fish in a small pond in the Shenandoah Valley. Perhaps he knew something I didn't, that I just wasn't coming home with a full bucket on that day. In order to increase the opportunities for special needs children, Dads' and Mom's, brothers and sisters, family members and friends are going to continue to have to generate awareness. We've done so much, but there's still a line that has to be crossed, where all people, regardless of ability have the respect of all. Dad's have an important role to play in this, and while it is easy to be angry over such news, the best thing that can be done is to turn that anger into a positive, by going the extra mile and participating in fun activities with your child. Life is sacred, and each day is a blessing.

The Angel Quilt Project: Fabric of our Loves, and Our Mortality

2011-10-25T14:17:00.000-07:00

Holding your child's hand, as they stop CPR is the most painful event, of my life and I still think of it often. Walking down that hallway after the ambulance ride, knowing that my son indeed would be dead, was akin to the green mile. I didn't like walking down that corridor, which wasn't long, but felt that way. As I walked into that ER room, seeing my son with his eyes open, and a trach tube in his neck, and having snapped at the paramedic who got me, I knew this was it. The rescue personnel and doctors and nurses, they had done all they could, and I knew the harsh reality. A woman's voice told me, "Okay Dad, hold on to his hand as we stop CPR." I don't know if it was the nurse, or a social worker who was an angel in every regard, but they stopped and the room emptied of people. I was alone with my beautiful little five year old boy, until my wife, and the grandparents and my brother showed up that dreadful night of November 2009.

Trembling, crying, and in a way living this experience as if I was not a part of it, I don't remember much of this night. I remember being at home thinking, my son is all alone, in the morgue. The anger of a red book on grief, when my son wasn't with us was palatable, and tension, and every emotion but mostly tears, seemed to be the order of that night. There was the road of guilt, pain, sadness, and anger that had to be dealt with later, but at the time, it was mostly shock. How could I be that guy? How in 2009, with modern medicine, in an area with phenomenal resources, could my five year old son be dead. Dead!Dead! Dead! Gone forever! I would never see him again. Not only until he was in his coffin, which is an experience I still cry about today, would I see my little blue haired, blonde haired boy who taught our entire family so much.

Tommy's clothes bothered me, items that he loved caused such pain, such tears to flow. I can't count how many times, that I just simply walked away, unable to take it all in. Coach Tony Dungy, of the Indianapolis Colts and Tampa Bay Bucs says it best about losing his child, "I'm still grieving." That is the case, as my family and I will never get over Tommy's passing. Yet we shall get through it. A good friend named Darren, from the land of Oz, has a description that I'm going to borrow from him, and I hope he's okay with it. "Journey." No, not the 1980's band with the bad hair, but that's what life is, a journey. Darren found out about Tommy's passing, as he's also an "angel dad," and that night, from across the world, got parents of Angelman Children to sign messages of love and support, and they arrived at his memorial service.

It meant more than words can describe, and I still read it from time to time. This provides a level of peace, to know that others felt the loss of Tommy, and after a path of many twists and unforseen turns, my faith is stronger than ever before. I miss him all of the time, everyday I think about my little boy. Yet I have no doubt that God will allow me to see him again, and that he's in the Lord's loving palms, as are all children, who are completely innocent of anything of this fishbowl of a world. The Angelman Quilt Project, has led to a lot of smiles and tears. Do I wish it didn't have to exist? Of course, yet I am thankful that it does. This is an effort, led by Angelman parents raising funds for fabrics, creating these quilts that have the "angel" whom passed away from an accident or seizure, and is given to the parents whom miss their little girl or boy.

http://www.facebook.com/methanross#!/pages/The-Angel-Quilt-Project/267961783227848. Please "like" this project, and if you can read more there. Its proof that we are all connected, as while these parents have an uphill climb, they will get through these trials and tribulations. They are not going to be easy by any means, but with each day beginning anew, there are still lessons and reasons to "carry on." The Angel Quilt Project delivers these quilts to families in profound grief, and are tangible objects, that can be held or placed on a wall to remember that their child meant a lot to them, and so many more. Each quilt has their little one, surrounded by fifty other children with Angelman children, to show the support and circle of life that we are all a part of, and that even though their pain is great, they are not alone. That's the key to a lot of it, because as I have walked around my son's cemetery, I realize that there are so many more in my heavy shoes, that have had to experience this pain, an although I am saddened by this, it also is a sign that there are others out there that need to be supported.

That's where you can come in. This quilt project, for just $10 will guarantee a patch of an angel child, to be sewed on to these quilts. Any extra funds are going to Vanderbilt University's Kennedy Center Angelman Seizure Project, so good does come from pain. While we all hope and pray that no other angels will be taken before their parent's time, when not if is sadly the reality. Children with this condition, like Tommy, are champions in every regard with their love, their laughs, their smiles, and also their determination to never give up in the face of so many challenges. To those angels, like Tommy who are now with our loving creator, you are at peace. To their families, this project is proof of the love around you, and even though you are in pain, and will be for the rest of your lives, there is still more good to experience. You will everyday think about your little one, and there will be some tears, but there will also be some smiles and laughter as well. Hold on to those happiest of times, and be thankful for those moments, because life is fleeting and each day is a blessing. Thanks to all whom have supported our family during our darkest of hours, we miss you Tommy, and are proud to support the Angel Quilt Project at http://www.facebook.com/methanross#!/pages/The-Angel-Quilt-Project/267961783227848.

Thanks to Another Angel, an Angel is Remembered for His Love of Jello

2011-10-19T19:01:00.000-07:00

The other day was a painful one. Well, all are, but some are worse than others, as I miss my son Tommy, who passed away from an Angelman Syndrome related seizure in 2009 at age 5. "Porky" as he was called, due to his rather linebacker like stature, walked tall his last week of life. So many are proud of him, and while he never spoke a word, his legacy lives on. Even with the loss of a child, I am still a very happy man, and feel blessed to have a wife that I love, a family that is dear, and many good friends along this journey. Some of them I have yet to meet, but look forward to that day, when we can sit down for that beer and perhaps a cigar.

A posting on the Angelman Syndrome Foundation's facebook board (ASF that is at http://www.angelman.org/ got me thinking. In fact, it not only did that, but it provided a smile and a laugh, of which Tommy was known for. Another angel mom, who I briefly had the chance to meet at an Angelman Walkathon in Columbia, MD, had a discussion going about what kinds of foods "angels" as children and people with Angelman Syndrome are called. This was an excellent topic, and an important one, as its good to share strategies, and find out what kind of foods might help with chewing difficulties or nutritional values. Yet this post also caused that grin, because it brought back a very happy memory. This angel mom touched a person from something that was helpful, but went much further than that.

I thought instantly, "Jello." As a kid, Bill Cosby was always on the television, selling what was one of my favorite foods. That was a good memory, but what really got the teeth to show, and the lips to curl into such a huge smile, was that I used to make Jello for Porky on a regular basis. All of us have different gifts, and weaknesses. One of the latter ones I suffer from is cooking. Yes, I've almost blown up a Charbroil Grill that scared the heck out of contractors working on my house, there have been uneven cakes, and I'm amazed the fire department hasn't been dispatched while cooking taco's in the kitchen. However, I was able to make Jello, and Tommy just loved it. He would eat it with a gusto of spirit, and his favorite one was the orange. Sure, I tried the other ones such as cherry and grape, but the orange one was certainly his Jello of choice.

Walking in the kitchen, I laughed thinking about those times making this gelatin substance. In a way Jello is like that fruitcake that makes the rounds, it certainly is an odd food. Yet I thought about this even further, such as the grocery trips just to get orange jello, and the joy of making this for Tommy. His eyes would brighten up when he saw this, and he just ate this food that I'm not sure is on the USDA pyramid, with such love. I think I'm going to make some Jello later this week, in honor of Porky. Its been almost two years since he departed this Earth, and he's missed everyday. Yet this memory, provided a lot of hope, and a lifting up of spirits. Its these small things in life, that we must cling on to, even in times of despair that can make all of the difference. Something as simple as Jello. Life is an interesting adventure.

Hope Reigns Supreme: Order a Decal or a Shirt and Help Harli Prove Even More

2011-10-18T05:33:00.000-07:00

http://harlican.armyofangels.org/cgi-bin/harlistore.cgi. This is where you need to go, to help a young lady with Angelman Syndrome, fulfill her dreams, and show her loving family even more of what she is capable of. She has already made a lot of progress, and in order to help her with the PATH, Planning Alternative Tomorrows with Hope foundation that has been set up in her honor, please order a shirt from here before October 31st. These help Harli, who has shown exemplary skills, including communication, for an "angel," and she is much loved. Her mom Tami is a go-getter who doesn't know the meaning of quit, and you could say, that this has been inspired by Harli, who knows love, advancing forward, and showing what the human spirit is capable of.

Wouldn't you like a cool t-shirt, that says "Hope Reigns Supreme", in a variety of colors, with a link to FAST(Foundation for Angelman Syndrome Therapeutics) on the front? These are some good looking shirts, and if you order by December 31st, you will not only be "styling and profiling", but also showing your love for Harli and all angels by wearing this shirt. I can't wait to order one, and hope others shall as well, and the days for all of us procrastinators is soon up. Now is the time, so please go to http://harlican.armyofangels.org/cgi-bin/harlistore.cgi, and help Harli get the chance to enjoy gardening, recreational opportunities that have been so beneficial for her successes, and have also led to joy for so many other people as well. If you aren't in the market for a shirt, consider a decal or other items, that are available from this store, that is built with love, and for a young lady that is the very definition of resilience. Let her have more opportunities for the art projects that she loves, help her with devices that allow her to live the "purpose driven life," that's so eloquently described in a book with that title.

"Hope Reigns Supreme," is so true. That's something that cannot be always held on to, or bottled, but it is powerful. We are closer than ever to a cure for seizures and Angelman Syndrome, than ever before. Until that day occurs, and God willing it shall, let's all step it up for Harli, and allow her to enjoy life to the fullest. You aren't only helping Harli, but so many who's lives she has touched, along with her family that cares so deeply about her, and only wants the best. At the same time, you can put on a shirt with a message that is true, and know that you've done your part, to bring a bit of hope to Harli. Please visit http://harlican.armyofangels.org/cgi-bin/harlistore.cgi. You will find love there, a quick checkout process, and will have a shirt that stands out, maybe not as much as Harli does with all of her kindness, but your compassion will most certainly be evident.

Friday Night Lights, A Walk Around the Football Field, Eyes on the Past and Future

2011-10-15T13:47:00.000-07:00

Last night, I attended the homecoming game for my high school, Fairfax, that's located in Northern Virginia. It was a lot of fun going with my father, watching the ol' team play sloppily but win, and to see a classmate friend of mine. Eating the $1 popcorn and the cans of Coke that probably were in the snack bar in the mid 90's, are still being served, and you cannot beat paying only $5 for this kind of entertainment. In many ways, it was a stroll down "memory lane," and for those who haven't had the chance, I hope you get to, as last night was a lot of joy but it also provided a few moments of reflection. These are good, and as I walked the same areas I did as a high school student, I looked back at the past, and the future.

To get to the snack bar, you have to walk all the way around the gridiron, and I saw a lot of young faces, people that have their whole future's ahead of them. My son's grave lies less than five miles from here. Smiles and laughter were visible, and homecoming queen contestants were hopeful about their dreams of going to college, along with making a difference in the world. Some of their goals were quite amusing, and provided a laugh, knowing that many of them are going to do well, but also life is unpredictable. As I walked the area on the fence, I laughed at this being the place I tried to get for dates, although I was so awkward and socially inept, that I probably couldn't have got a date if I paid for it :). Yet here were these young people, in the prime of their lives, and my son's grave lies just a few minutes down the road. It is a stark contrast to them, here you have young men and women who are just getting started, and a five year old is buried six feet deep under red roses.

These high school kids have dreams. I hope that they are able to achieve them. Yet when looking at the thousands of people, I couldn't help but think, how naive I was about life back then. I also realized I'm getting old. That's okay, as these young people don't have the grey hairs, the lack of hair, or the battle scars that they hopefully don't have to earn. At the same time though, when you think about how many people were there, some of these kids one day are going to have a child with special needs, or contend with the loss of one of their own flesh and blood. A lady yelled at the food counter, impatient with these high schoolers, who seemed to be the very definition of "human cholesterol", at the snack bar. I ordered some popcorn and those sodas, and walked on back. Some of these kids, whom are so happy right now, unless cures occur at a miraculous rate, are going to contend with tragedies in their lives one day.

It was fun watching some fine passing and tackles. No one was seriously hurt during the game, which is a win, regardless of what the score on the boards show. Life is unpredictable though. Many of these homecoming king and queen candidates, along with the high schoolers in attendance, will one day have to contend with a child who has special needs, or perhaps having to put dirt upon their little girl or boy. They walk the sidelines with a wide open future, as truly the world is their oyster, and they haven't seen yet what reality is all about. I hope they are enjoying it, from the bottom of my heart. As I rounded my way up to the stands, and had a near accident trying to climb over a fence to get there, that was another close call. We don't know what lies ahead of us, but all we can do is just hang on, and do the best we can regardless of the circumstances that have been thrown to us. Hopefully it will be a touchdown, and not an interception, because we must remain going for that "first down" regardless of how many challenges are flooding us from every direction.

Perspective Changes, and a Walk Around Fairfax Hospital

2011-10-13T21:53:00.000-07:00

This past week has been frightening at times, as my wife and her mother, were both admitted to the hospital with a serious medical condition. Hospitals by their very nature, aren't places of comfort, although in most cases people do convalesce there from injuries or other illnesses. This week was a fine example of that, as I had conversations with their doctors that caused me to shake inside a bit, and realize how valuable each day is, along with how much I love both of these wonderful people. While they went through the most stress obviously, and a lot of pain, I am glad that they are now home and recovering well. At the same time, there were lessons learned during this experience, as this was the first time I was able to walk around, the places where my son was brought in for the last time.

Tommy passed away in our house, but he was "declared dead" at Fairfax Hospital. This was while I held his hand, and the CPR was stopped. Often I drive by this hospital, and shudder thinking about that horrible night in 2009, and often try to ignore it. Yet this incident forced me to go there, and I walked by the pediatrics ER where all of us cried tears along, with the reality of our little angel being gone took place. As I walked these corridors, I saw plenty of nurses and doctors. I thought about them. What do they feel after these events? How do they get up every day and night, and deal with these situations? They are brave souls, and they have to contend with the throes of pain, right in front of their eyes on a regular basis. They have my admiration, and although I didn't see the social worker that helped us that night, she knows of our love for her.

While I wish I didn't have to return to this hospital in this type of event, I am thankful for it in some ways. Sure, my wife and mother in law suffered, and we are probably going to be switching from the generic food brand to God knows what now. Yet we are lucky. We are blessed. All of us through our various journeys, of this incident, walked out of it with different perspectives. My wife and mother in law, who's a second mom, got a second chance. I gained a new appreciation walking around, looking at folks whom go to work everyday, helping people not only survive but thrive. True I am biased a bit as my Mom is a retired nurse, but this was therapeutic on many levels, being able to walk by the corridors of that awful night, and to look at the artwork painted by school children.

Some days really stink, yet we are blessed. There is always someone who has it worse than you do, and our pain is a shared experience on many levels. Walking by other family members who had loved ones in the hospital, there's no words, but an understanding. Often in the bustle of life away from this building, there isn't, but here it is a weight that is hard to comprehend, unless you are wearing those same shoes. It is a kinship of sorts, and through the quiet prayers in the chapel on site, the various waiting areas, this silence permeates into something that you cannot touch, but you can most certainly feel. The future is unknown, but each day is appreciated, even the ones where everything is upside down. While these are hopefully kept to a minimum, its the good days, that make these ones a bit more bearable.

The Angel Quilt Project Touches Hearts from Loving Souls

2011-10-08T04:51:00.000-07:00

Like facebook? If so check this out http://www.facebook.com/pages/The-Angel-Quilt-Project/267961783227848?sk=wall. This is called the Angel Quilt Project, and it is an effort of love, to those going through immense pain. I've buried my own child, and its something that I would not wish upon, if I had a worst enemy. There's no words that can describe it, other than a knife in your soul. The wind is kicked completely out of you, and there's just this heartwrenching finality, that makes you feel as if you died yourself. It hurt to see that coffin shut on my son. The pain was harsh carrying him out in that same coffin, into a limo to his grave. My soul was tore apart putting dirt down upon his coffin, that was lowered by a pulley system, six feet deep. You aren't supposed to bury your own child, that is not how life works. Yet it is. Its happened to me, and thousands of other parents around the world.

Recently, the Angelman Syndrome family has lost a lot of angels. Each one re-opens wounds, that will never go away. Yet, even with this burden of tears, this sympathy for other parents that I cannot describe, there is hope. A angel mom named Susan, along with a bunch of "angels" whom are quilting right now, are doing something so beautiful that it has led to tears of joy. Its brought some comfort, knowing that those who are going down this road recently or right now, are going to have a quilt of their Angelman child, whom they miss so much, surrounded by a whole bunch of other children with Angelman Syndrome surrounding them. What love could be greater than this? Its something these parents can hold on to, cry and have good memories while touching, and also let's them know that they are not alone. http://www.facebook.com/pages/The-Angel-Quilt-Project/267961783227848?sk=wall.

That's right, alone. Until recently, I had no idea of how often the death of a child occurs. This is even more prevalent in the Angelman Syndrome family, and that's not to scare anyone, its just that these young boys and girls are vulnerable even though they are champions in every regard. Whether its accidents, seizures, or medical complications, these kids have hearts of gold, but due to circumstances beyond everyone's control, they do face health issues. Most angels thankfully live a long life. I am thankful for that, and pray constantly that no other parent of any child, not just a child with AS as its known, has to go through this. Sadly it is a when not an if "proposition.". Yet there are advances, such as what's been going on with FAST(Foundation for Angelman Syndrome Therapeutics) and ASF(Angelman Syndrome Foundations), work, along with what the good people at Vanderbilt's Kennedy Center Angelman Seizure Research Project and others are working on.

That is a beautiful thing. Yet sadly there are going to be angels who gain their wings, much sooner than we wish they would. I visit my son's grave fairly often, and walk around, looking at the marker's of so many other children. Death is an uncomfortable subject, yet it is a reality, as we all have our day etched in stone. Yet, what do we want to do, hide from what is going to happen, or look at it in the eye, and love one another more in really, what is a short period of time regardless if we live for five or one hundred years? The Angel Quilt Project is one way, you can show that love, this passion that we all have in each of our hearts, that will let other families know, that we are with them. Please go to http://www.facebook.com/pages/The-Angel-Quilt-Project/267961783227848?sk=wall. "Like" this page, to show these parents, whom we feel compassion for, know that we are with them. If you can donate a bit of money, or lend a hand to the quilting effort, that would be appreciated. We each have a day, and this project is a way, that we can do our daily turn, for those who will perhaps shed a tear out of the joy, that they know that they aren't alone. That's the worst feeling of all, and knowing you aren't, is a redeeming moment, even when the world surrounding you has crushed your spirit.

The 4th Annual Bella Bash: Nashville, TN October 20th: Be There!

2011-10-05T06:22:00.000-07:00

For those who have not had the chance to read Regie Hamm's "Angels and Idols" book, by all means pick up a copy, and prepare to cry and be inspired at the same time. This moving book, about the love he and his wife Yolanda share, along with their involvement with American Idol and their children, will have you realize the value of enjoying each day as the blessing it really is. Every year, the Hamm family holds a "Bella Bash," that's named after their daughter Isabella, who has Angelman Syndrome. This is caused by a partial deletion of chromosome 15, it is on the autism spectrum, and "angels" are warm and loving souls, whom deserve our support for helping them achieve their dreams, along with finding ways to give them assistance with seizures and other issues regarding this condition. Would you like to experience the hug of your lifetime, while also being entertained, and supporting a good cause? If so, be sure to attend the Bella Bash in Nashville, Tennessee.

That's right, the heart of music, and also where the love of many will come together on October 20th, 2011 in the fourth annual Bella Bash. Go to http://www.bellabash.org/ for more information, but here you can have fun with the "angels", and support them at the same time. The Hamm family's Angel Wings Foundation, and Vanderbilt's Kennedy Center will be happy to see you there, along with the following acts to see on stage. These include award winning artist Amy Grant, along with Bob Carlisle, Gary Mule Deer, The Martins, Tim Akers and the Smoking Section, and Becka Brown. This event will be held at the inappropriately named "Loveless Barn," but there will be a lot of love and soul there that night. You will see it, you shall feel it. There are no words to describe it, just be sure to be there and experience this passion firsthand. By going to this fun filled event, you shall enjoy a lot of good music, plus helping a cause that is so worthwhile, and those hugs will leave you knowing that you've done more than just done a good turn, but done something spiritually fulfilling.

Come on down to Music City, and enjoy the Bella Bash. Learn about her love, and the love of all angels. You can purchase tickets online, or sponsor an angel at http://www.bellabash.org/. Be sure to also purchase a copy of "Angels and Idols," if you can, so that you can better grasp what Angelman Syndrome is, learn a story that is felt by many of your fellow human beings. Each person has worth and dignity, and although angels are born with a deletion of an important chromosome, their love is second to none. Organizations like the Angel Wings Foundation and the Vanderbilt Kennedy Center are working hard to generate awareness, along with assistance on seizures, and perhaps one day a cure for this. With love to the Hamm family, and all they have done, along with the "angels" that have provided hope along the way, may you enjoy this event, and know what the meaning of true love is.

Running for Angels: A Group Based on Love, Sweat, and a cure for Angelman Syndrome

2011-09-29T04:56:00.000-07:00

Running either makes you smile or groan. As an occasional runner, who is able to pick up the pace only by having an angry dog behind me, I won't be breaking any speed records. There have been no "runner high's" in any event that I've ran in, but what one group is donig, is creating a lot of joy. Created by Jason Bernstein in Sept of 2010, Angel Runners, are a group of parents who want a cure for Angelman Syndrome.(Caused by a partial deletion of chromosome 15, http://www.cureangelman.org/) for more information). Jason was so touched by young Reece, and other "angels," that he decided to have this group raise money for FAST, which is the Foundation for Angelman Syndrome Therapeutics, and they've been wildly successful. Much more is to come with his dedication and vision, along with his passion for other parents, and most importantly the angels whom we all care so much about.

Along with another group called "Miles for Smiles," the Angel Runners have raised almost $40,000 to help with Angelman Syndrome research. A lot of this is being done by Dr. Edwin Weeber, who's been able to give a mouse Angelman Syndrome, and cure it. We are getting closer, just like how the Angel Runners are to that finish line. When these kind men and women go out, they are as Jason says, "building awareness, raising funds for research, but also bringing families closer together." That is so beautiful, and they have events on a regular basis. One that is very exciting, is going to take place in the Windy City on December 3rd. That's right, Chicago where the FAST Gala is taking place, these brave and hearty souls are going to say "to heck with the Great Lake effects," and run a 5k in Santa clothes. Its called the "Santa Hustle," and while let's hope it won't be too cold for them, may they be able to hustle through this event to a warm place." This is an incredible effort, and just such another way of bringing the love of those with Angelman Syndrome and their families, that research in a fun and unique way.

Would you like to help the Angel Runners? Please do, by checking out their webpage at http://www.angelrunners.com/. They have all kinds of events for good causes, and in addtion to helping charities, are establishing partnershps and also getting folks "moving." That alone is worthy of kudos, but their efforts with the folks at FAST are truly commendable. Feel free to join this group for one of their events, or if you don't like to run, you can still get one of their cool t-shirts. I plan on ordering one, and hope others will as well, as its a good looking shirt that shows an organization that was built out of love, and a passion for generating enthusiasm for folks by a good deed. Thank you to Jason and the folks at the Angel Runners, may you have continued good luck, and keep bringing families closer, along with a cure to Angelman Syndrome that everybody dreams of.

The Angel Quilt Project: "Like it" on Facebook But Love It

2011-09-27T09:02:00.000-07:00

Would you like to bury your child? Of course not. No one wants to have their child die before they do, it goes against the grain of everything we hold to be sacred. Yet it happens, much more often that we would like to believe. It doesn't just happen in some isolated region of some poor country, it happens in the most advanced hospitals and homes in the United States, or in parts of Europe that are considered "medically and technologically advanced," or places in Asia and Africa that have specialists that save lives on a daily basis. Yet its not always in the cards, as I'm the father of a child whom went to God far too early. Don't feel sorry for me, but rather do a good turn.

I know death of a child is an uncomfortable subject. That "d" word is uncomfortable for a lot period. However, by liking the Angel Quilt Project on Facebook at http://www.facebook.com/methanross#!/pages/The-Angel-Quilt-Project/267961783227848?sk=wall you are showing your love to parents in this great sadness. They are not going to ever get over, but God willing they shall get through their trial and tribulation, burying their little girl or boy whom they cherished so much. This project is going to help people who love to sew, design quilts with patches of pictures of this young girl or boy, who went to God too soon, and have them surrounded by other Angels.(Those affected with Angelman Syndrome, a partial deletion of chromosome 15). That is a powerful image, and shows that in the fabric and the pictures, the love that this family feels from all across the globe. They know that their beloved child, while in Heaven, is not forgotten here on Earth. These quilts can provide a little comfort, during their time of great sadness, and its something physical, they can either hang up, or cry into. Whatever makes them feel better, because there are going to be tears, feelings of anger and guilt, but there's also going to be hope.

It takes fifteen seconds to "like" this page. That's all, a couple clicks, and its done. You can feel good by just doing this simple thing, and families around the world will know, that you are thinking of them. If you can donate time by quilting, or even just $5 on the secure donation page on the left hand side of the page, that would be helpful with the materials, that aren't cheap. Any leftover money is going to directly help the Vanderbilt University Kennedy Center Angelman Seizure Research Project as well. Please at the very least, "like" this page. It means a lot for grieving parents, those whom love someone with Angelman Syndrome, and provides a powerful expression of unity with these fabrics being woven together with compassion. http://www.facebook.com/methanross#!/pages/The-Angel-Quilt-Project/267961783227848?sk=wall

Little Run, Waples Mill ES, and Tommy : Angels Help an Angel and Much More

2011-09-25T17:33:00.000-07:00

Tommy lived with us for five years, and he certainly did a good amount, in the short time he spent on Earth. It was so devastating, right to the core, to find out that such a beautiful young boy had a condition called Angelman Syndrome. We were told 'point blank', that there was a good chance that Tommy would never walk. As if it doesn't hurt enough to hear about your child having severe intellectual disabilities, not being able to speak to you, having regular seizure activity, it was perhaps the hardest to think of him not having mobility. That just really caused a lot of pain, tears, frustration, and angst over his future. Yet "angels" stepped in, and these were the Administrators, Administrative Assistants, Teachers, and specialists that worked at Tommy's school. Who knew angels worked at a school, because as a young boy, I was convinced that it was only the friends of the devil himself whom tormented me with my free admission to the Principal's office on a daily basis. Looking back, I realize it was my fault completely, but I just had no idea of the impact a school could have on my son and also our family.

Until Tommy went to Little Run Elementary, located in a beautiful neighborhood just east of Fairfax City, VA, I thought school was where he would be "institutionalized," perhaps maybe get a chance to see other children. It was much more than that, as Tommy loved the bus that came each day, and the kind drivers and assistants who saw him safely to and from Little Run and Waples Mill Elementary later on. We didn't have a lot of hope, and I now realize that our family, although we loved Tommy, was in a cloud of constant depression that just seemed to linger until he went to school. There we saw people who cared about him, about us, and greatly wanted him to succeed. It was the complete opposite of what I thought, and I now admit that I was jaded and completely incorrect about the importance of special education to not only the child, but also the parents, grandparents, friends, and even neighbors.

Teachers taught Tommy "cause and effect," and he loved these lessons. There was one teacher, whom I am smiling of while typing this, who comes across as the most compassionate drill instructor from Parris Island of the United States Marines Corps. She promised us that "Tommy would walk, you shall see." I was skeptical at the time, thinking "that would be great, but I'm not going to bet the house at Vegas on this happening." She worked with Tommy everyday, along with kind occupational, speech, and physical therapists who didn't give up on him, or us for that matter. They taught us how to become involved, and this made us feel better about Tommy's chances, along with providing us an opportunity to lift this cloud of depression that just seemed to hang around. We felt a lot better, and the school became a part of our lives, as we enjoyed the home visits and interactions there as well. The smiles and laughter each visit, whether at our house or at the school, are proof of this. It cannot be put into a bottle, but I'm still smiling and laughing about some of Tommy's adventures, and how these teachers and specialists, were so intertwined in our lives. They still are, and I am thankful for them.

Later on Tommy went to Waples Mill Elementary School. He was loved at this Fairfax County Public School as well, and it was a similar story over there. At first, our family was a bit concerned about the distance, but that abated as Tommy got stronger, with his health and started to walk in the pool that previous summer. I miss Tommy while writing this, yet I am happy that he did as that teacher said, " he will walk, you shall see." She wasn't kidding, as her hard work and dedication to Tommy shall never be forgotten, nor shall all of the kindness and love that everyone who was part of Tommy's life. His last week of life, before a seizure took him, he walked across our living room. That smile said it all. He did it without assistance, standing strong, and refusing to give up. God bless you Tommy, we miss you, but are thankful for you and all of the kind folks we've met along the way.

A Seizure Cure is Needed Because.....

2011-09-22T03:34:00.000-07:00

Right now a parent is up with their little girl or boy, watching them seize up, and monitoring their vital signs. They are stressed out about their cherished child turning blue from a lack of oxygen, and wondering "could this be the one?" Each day they live with this in their hearts and minds, and it greatly affects their quality of life. Parents of children with seizures have a special connection, that is more powerful than your traditional parent/kiddo relationship, in that they suffer together. If it isn't painful enough for a child to have hundreds of times a day, or have them so bad that their development is negatively affected, imagine their parents. These brave folks, and what they have to contend with every single day. That's right, 24/7, as most of them are sleep deprived, and how they get up every day, is a testament to their strength.

A cure for these parents would be so helpful. They wouldn't be stressed out as much, wouldn't be in and out of sleep on even good nights, worrying that they are not going to be there to insert diastat into their child's bottom to save them. These parents would be even more productive members of society. Each year at the Angelman Walks, I am amazed by how giving parents of children with Angelman Syndrome are, along with other conditions. They don't know the meaning of "quitting," but rather sharing their knowledge and helping out the communities that they reside in, even despite the multitude of challenges that they face every single minute. The same can be said for parents of all special needs children, as they show a resilience that is hard to put a finger on, but rather it is possible to follow by seeing what these folks contend with and still succeed.

If these parents didn't have the pressure of seizures, it would be like that "anvil of weight" described in Arthur Miller's "The Crucible" being taken right off of Giles Cory. There would be much more sleep, even more productivity which is hard to imagine but a beautiful thought, and children affected by seizures would have much happier lives as well. That would be a winning hand, a true grace and respite from so much pain, that so many parents and grandparents, along with siblings are experiencing right now. These great parents would finally get to sleep peacefully, knowing that their children are fine, and not having to think about the game plan, or perhaps calling 911 or worse. Instead, right now there's parents up across the world. They are stressed because of seizures, and for that reason alone we must do everything in our power, to at least lighten up the load a bit.

Hug Your Kids, Tell Them You Love Them

2011-09-20T17:49:00.000-07:00

Tonight, my two year old boy is acting up. That's right, he might be on Ebay with an opening bid of "We'll pay you to take him if here in twenty minutes." We've all been in this situation as parents, where there are times that we wish, "couldn't John or Susie just go the heck away for awhile? Can't they just behave? I never did that!" Your baloney-o-meter arrow just went all the way to the right on that, as we have all driven our parents or loved ones "crazy" at one point or another during our lives. I am thankful for my parents, whom were not my best friends growing up, but parents, for teaching me the values of honesty and loving an even difficult person.

Right now, that would include my two year old son, who's a real handful. Yet I am thankful for him, and will be even more thankful when he's a bit more "laid back" and not so "full of vinegar." I make no bones about it, that I am much more sentimental than I used to be. Every day I would just wake up, go through the motions of a day, and then just like everyone else, go to bed to start the process all over again. Now, often its full of walks in the woods, quiet periods of reflection by a nearby lake, or even just long country drives to the middle of nowhere. Sometimes a quiet prayer is said. Other times its a bit more loud. Rarely does it not happen, but sometimes that is the case.

My chronological age might be thirty five, but I feel as if I've have lived a million lifetimes. It has not made me any wiser, but I do believe that going through the loss of a child, has caused me to be much more reflective about life. I meant what I said the night of Tommy's memorial service, "Hug your children," and continue to do so, for the very reason that we have no control over our child or our lives glass of sand emptying. Yet we can hug our children, even if we are tempted to sell them on ebay. Its a way of letting them know that you love them, that you are there for them, and will do the best that you can to provide for them. Yes, they may not have a huge house, or a trip on a luxury liner everyday, or that damn Lego set that costs a car note, but they will have your love.

You cannot put a price on that. Studies have proven that children of stable environments, regardless of whether there is one parent or two, do much better academically and socially if they feel loved. What does that mean, "feel loved?" Its simple. They know that a parent or responsible adult cares for their well being, would do everything within their reasonable power to help them, and shall guide them on the correct path of life. Its as simple as that. All of the late night walks, prayers in a car on top of a valley, that's what I've come up with. Could it be wrong? Certainly. Yet I believe, just as I did that night of Tommy's service, when family and friends came together, to celebrate his life, that hugging your children is the most important act a parent or loved one can do. It speaks volumes, more than words can ever convey. Don't go to bed angry at each other, and by all means give your boy or girl a hug tonight. Do it for them and do it for yourself, because no one knows but God what tomorrow will bring. Tonight my two year old boy will get a hug, because I love him, no matter what.

Susan Agrawal and Complex Child E-Zine: Bringing a Powerful Voice to the Special Needs Community

2011-09-17T09:51:00.000-07:00

"The magazine actually started quite by accident. I was writing
medical articles for a newsletter associated with a parenting site
that focuses on kids with medical issues (Parent-2-Parent.com). I had
finished three pieces when they decided they were no longer going to
publish the newsletter. People knew I was working on these articles
and kept asking me about them, so I eventually put them up on a little
website. The more I thought about it, the more convinced I was that
there needed to be a space on the internet where we could archive all
of the important knowledge we have gained as parents. Shortly
thereafter, I bought the domain and put up the first edition, in
February 2008. You'll notice that the first edition, and a few of the
editions following, are written mostly by me.

I can't say I really had a great vision. If anything, the magazine
was born out of frustration. I would read print magazines for kids
with special needsor visit websites, and the vast majority of
information was on children with mild disabilities or common
disabilities like autism. I never found a place where I felt there
was significant information about children with multiple severe
disabilities and children with complex medical issues. Also, most of
the articles I read were either written by professionals for
professionals, or were written by professionals for parents. I often
felt that the professionals knew their stuff, but lacked the practical
knowledge that parents have. Parents of children with complex needs
are a wealth of untapped information. I wanted to get everything they
knew into one place, where it could help other parents traveling down
the same path.

Right away we had success. I found out a major children's hospital
uses some of the early articles to help prepare families for certain
procedures. Articles have helped many families fight insurance
battles. In particular, the article on Special Needs Beds has helped
15 families (that I know of) get their beds approved. Our first
editions on mitochondrial disease in 2008 and dysautonomia (also 2008)
provided information that at that time was not widely available.
We've helped multiple kids get a diagnosis, and improved the care of
lots of others. We've helped parents get organized and cope. One of
our authors even got a job, in part because of her writing for the
magazine.

The magazine is 100% volunteer and unfunded. All of the authors
contribute on a volunteer basis. I do most of the technical work. I
have an assistant editor, Shannon Gonsalves, who helps primarily with
copy editing. We don't have a budget. I've chosen not to include
advertising on the site, which means we have no income. When/if I get
more time, I would like to work on developing a non-profit arm that
would fund the magazine and allow us to have some paid help."

**Written by Susan Agrawal of Complex Child Magazine, which can be read at http://www.complexchild.com/. Thank you Susan for providing an outlet for parents with children whom have a multitude of health concerns, and empowering so many. It has been a joy to have seen your work help others, and may anyone who is interested in making this publication even more available, by all means visit this website. **

Alarm Company LLC, Matt McMillen Touch an Angel and So Much More

2011-09-15T12:51:00.000-07:00

"I happened to stumble across Alarm Security LLC.com while bored and clicking around on facebook. This was the first contest and I noticed a chance to win a free iPad II. The question was, "If you won an iPad, who would you give it to and why?" I was skeptical because there are many contests to win a free iPad on the internet, but the more I checked into it seemed legit, as I seen local friend's associated with family who had entered. The contest rules were quite simple: The comment with the most "likes" in 24 hours wins. I realized I may have a good chance and to win for Joshua. I then summoned my "Angel Army" and they were right behind me, because they knew what an iPad means to an Angel or any special needs child. I wanted the iPad because of the exclusive applications and know that they offer more than a typical communication device. I was running neck and neck with another contestant, during the contest Matt friend requested me personally and I began to realize what a wonderful man he was. I wanted to win, but the contest was so fun.

I had conceded to the other contestant who had 9 more likes than I did, but I walked away filled with joy and pride. I realized that I had 302 "likes" and that meant people behind me, which was a majority of my Angel family pulled together to support me. This was priceless that so many people cared! I even had Angel friends I had yet to meet who were in my corner, just because I had an Angel! When I went to write a congratulations to the other contestant on the while my notifications were going crazy! I had more than 70 within a minute, my chat box opening telling me I had won. I seen Matt's comment about giving us both one and I was reduced to tears! Not because I had won, don't get me wrong it was awesome, but because of the happiness that there are still people in this world with giving hearts. His genorousity amazed me and although I had never met him in person, I already could judge his character and know that he was an amazing man! (Winning the iPad or not)

Soon, we will go meet Matt when I get up that way for an eye doctor appointment. I have spoken to Matt over the phone and facebook and am proud to call him a friend. He and his wife are both beautiful people inside and out. I have never won anything really, so I felt guilty about accepting the iPad. I felt like there were other's more deserving than I was. This is why I wanted to pay it forward and I hope more people do, because what a wonderful world it would be if each person just showed one another a kind action. iPads are expensive, and Matt seems quite blessed financially. I am glad that he is not greedy and shares his wealth to make the world a better place. As I have said, many major corporations become greedy and lose focus on the customer, Matt on the other hand would hands down put his customer needs first. I want to continue to pay it forward, and realized you don't have to have a lot of money to do this, opening a door for someone, paying for their cup of coffee anonymously, helping load groceries for an elderly person. All of these are things you can do to help someone! And if you are blessed financially then you can help people on a larger scale. I hope Matt is proud of what he is doing and realizes the level he has helped people, including msyelf. I also hope that he continues to receive business and that one day Alarm Security LLC will be just as much of a household name as ADT, Brinks or even Vivint. Which Vivint is another great story in itself and we know that!

The iPad has really changed our life, and I am not sure how we made it all this time without it, lol! This thing does everything. I am not going to lie when I say I have used applications to budget the bills! Or that Joshua has shared it with his siblings. ;-)[Image] It's really cool!

For Joshua it has helped with so much. We are still learning and I am overwhelmed with the applications and possibility. I am starting to think there is an application for EVERYTHING! We have taken advantage of many of the "free" lite versions. We have one called Talk2, and Joshua was able to tell us that he would like a drink of soda. I realized he wasn't pressing buttons randomly, but that he really wanted Kenny's soda he was drinking. He usually signs "Please" for a drink, or really anything, but he was able to be specific and tell us!

We have also played several sorting games, association games, matching games and so forth. These are so fun and they have made me realize how much Joshua really knows. For instance there is this one that will show three pictures and play a sound. An example was a picture of a door bell, a cow, and a hair dryer. The sound was a bell and Joshua was able to point to the door bell.

I also have used it myself and downloaded lite versions of behavioral situations and how to properly deal with them. One potrays an autistic child who is having a "meltdown" and it is a simulation where you have different options to console the child. It teaches you how to properly deal with the behavior.

The possibilites on the iPad are endless and needless to say, I know that Joshua will be asking Santa for iTunes gift cards. There is an application called Proloquo2go that is an augmentive communication program that we would like to buy. We are using the lite version and it is amazing!

Joshua lives and breathes the iPad. He wants it from the time he wakes up until he falls asleep, in fact there have been a few nights that I have had to pry it out of his hands because he has fallen asleep with it. He loves it and it keeps him occupied and most importantly he is learning and able to communicate with us.

We are just so grateful!

**Angelman Syndrome is caused by a partial deletion of chromosome 15. For more information, feel free to visit the Angelman Syndrome Foundation at http://www.angelman.org/ or the Foundation for Angelman Syndrome Therapeutics at http://www.cureangelman.com/. Donna is a wonderful lady, and her love as well as Joshua inspire us all. Now, for a moment read about Matt McMillen, from Alarm Company, LLC, a business that in addition to having an incredible reputation, has an owner that understands the concept of hard work and love.

My name is Matt McMillen. I reside in a small town in Missouri, called Farmington. Farmington has a great feel to it. It is growing rapidly, and everyone knows everyone. I own a company called Alarm Security. We specialize in home and business security with alarm monitoring and video surveillance. I've been in the business since I was 19, and I'm now 30. I LOVE what I do. And I'm good at it. Around here, if you own a company and do good work (or bad work), everyone knows about it. Any company can spend money on advertising. Billboards, radio, newspaper, phonebook, etc. But no matter how much you advertise, people in our community trade with companies because of ‘word-of-mouth’. People buy from you, because they like you. Not because your face is all over the highway and your jingle is played on the radio 30 times a day.

What’s set me apart from a lot of other business owners is: I know that people want to get to know you as a person. As a business owner, I have a budget for advertising. The budget is there, and people DO need to know the Alarm Security name. But I’ve come to the realization that I can give it away, help those in need, and do even more with it. I’ve worked very, VERY hard to make my company what it is today. I’ve been blessed. I’m honest with people and treat everyone like they are my family. Showing love to others, in whatever way possible, is what life is all about. Just sitting down and listening to someone tell you about their struggles, issues, or accomplishments, makes a world of difference in their life.

I grew up poor and from a broken home. I have 3 brothers and a sister. Going in and out of foster homes was very difficult. But I look back now and realize it only brought all of us closer. We are all VERY close. Even to this day. My Grandmother eventually raised us from the time I was 12 and on. She is the one and only person on this earth that I consider a role model. She instilled love, forgiveness, and compassion in all of us kids. The sweetest woman ever. She made me, ME. She didn’t have to raise us, but she did. She is the greatest person I’ve ever known. Even now, in her 80’s, she will call me and tell me a story I’ve heard a hundred times, and I STILL get something out of it. In my eyes, she is the greatest teacher of love ever to walk this earth.

I was very successful at a young age, and I’ve always been driven to be the best at everything. So when I started my company, Alarm Security, I knew it would never fail. No matter what, I wouldn’t allow it. I’ve always been told that I was gifted with words and that I had a great work ethic. I’ve done things that most people would give up on because it was just too difficult. It’s been a long time coming, but my company has peaked is THE STANDARD for security in our area. People know us and love us. And ask for us by name.

We secure thousands of homes and businesses from harm, every day. 24-hours a day.
As the years have gone by and I’ve advertised, my wife told me, “You need to start an Alarm Security Facebook Page.” I looked at her funny and said, “Why?”. She went on to tell me it’s easy to start one and a lot of companies are doing it. This was summer of 2009. So, I did. I didn’t know what to post except security facts and specials we were having. I got some response, but not much. So I spent money on FB ads. Eh…didn’t really do much. Then one day, I had a phonebook advertiser ask me. “What makes you different than other alarm companies?” So, I proceeded to say this and that, like a sales person would do. Then the lady said. “No, what makes you stand apart? From everyone else.” My answer was, “Me.”. She said, “That’s a good answer.” So at that point, I decided to brand my company with ‘ME’.
It was weird at first, putting my face out there. On everything. But it worked. People started to see how much I cared about them, as a person. People got to know me, then my company. And that’s how it should be.

So, back to Alarm Security’s FB page. I decided to stop pushing my products and services. I wanted to ‘give back’. I wanted to make someone’s day. Now, I want to point out that Facebook has revolutionized advertising as we know it. There is no other tool, as a business owner, that you can connect with so many people on a personal level ALL AT THE SAME TIME. By me branding “Alarm Security” with “Matt McMillen” and my personality and values, Facebook was and is that final ingredient to bring all of this together. I’ve done MANY contest giveaways. And those contests usually require the person posting a comment to say something very personal in order to be eligible to win. It started out small. Not many people would post something SO personal, just to win. But as time went on and Alarm Security’s FB page became a place of love and sharing. Now, thousands of people tell their most intimate stories. Stories about love, friendship, kids, family, heartache.

One of those stories in particular was the story of Donna Sweet and her boy Joshua. I had a contest for an iPad 2. I asked, “If you won Alarm Security’s iPad 2 and had to give it away, who would you give it to and why?” Oh my God did the comments pour in! It went nuts with hundreds of comments. The comment with the most likes would win. I got MANY inbox messages both good and bad. The good, I thanked. The bad, I sternly said, “This page is not for you. We are about love. Go somewhere else”. In the end, a woman by the name of Kristin Hale won by just a few votes over Donna. Kristen wanted the iPad 2 for her daughter. Donna, for Joshua. Joshua has a disorder called Angelman’s Syndrome. And in Donna’s post, she very sweetly let us know how beneficial it would be for him, his development and communication skills. Bless Kristin’s heart, she was getting hate mail telling her she didn’t deserve to win because Joshua’s story was worse. Bottom line, KRISTIN DID DESERVE TO WIN. And won fair and square. When I talked to her after she won, she was upset. I assured her that I was glad she won and I hope she enjoys the new iPad 2.

Donna’s story touched me as well. And she was SO close to winning. I really felt compasion for her. So I gave her an iPad 2 as well. The amount of thanks that she has shown to me has been nothing short of amazing. I’m touched by the articles she's had printed in the paper about me and all of the publicity she has given Alarm Security. It feels good to help. Donna has shown an extreme amount of gratitude. And I’m thankful that she and her son Joshua are getting a great benefit out of one of my contest winnings. When it all comes down to it, life is about people. Listening to people. Forgiving people. Thanking people. Loving people. If what I’m doing is making a difference in people’s lives, then I’m honored and I’m proud. I hope to inspire all of my friends on Alarm Security’s Facebook page to live life like it should be lived. With love."

http://www.alarmsecurityllc.com/ : Check out Matt's company here. He is a shining example of protecting and helping others, and God bless him, his family, the Sweet's, and all of their collective dreams, which are so intertwined with beauty.

Rett Syndrome: A Story of Love and Courage From a Great Mother

2011-09-14T12:37:00.000-07:00

This blog is dedicated to my son, Grant Robert Simard, who has been the best son and brother that anyone could ever hope for. Miss Ashley B. and I are very proud of you and we love you so much.

Rett Syndrome is a neurological disorder, occurring most often in girls. Typically, your child will develop normally, and then between six to eighteen months of age will regress, losing skills that have been acquired. Rett Syndrome robs your child of the ability to speak, to walk, and to use her hands. With Rett Syndrome your daughter may suffer from seizures, scoliosis, and Long QT Syndrome. Breathing abnormalities can be found in girls with Rett Syndrome.

It seems like Rett Syndrome has been a part of my life as long as I can remember. I have distant memories of what life was like before Rett Syndrome and who I was and it is as though that is another person, a stranger that I do not know. The hopes and dreams of what it will be like to be a parent can sometimes turn out to be just that; hopes and dreams. Hopes and dreams that can never be fulfilled regardless of how much you want them and how much effort you put into making them happen. Expectations, that at some point you realize were never meant to be.

For me, having children was really all that I ever dreamed about. A chance to make up for the not so great childhood I had, and care for my children the way children should be cared for. That fall night, 24 years ago, when I found out that I was expecting my first child was the highlight of my life. I have never experienced that feeling since then and sometimes over the years when I have thought of that night, I cringe at how naïve I was not knowing what was in store for us. Not knowing that fate was going to take me to places that I did not want to go and that I never thought possible.

Miss Ashley Bernadette was born on June 18, 1988. She was beautiful and perfect in every way. At just a few months old, she made great eye contact and people used to comment on how social she was. She loved the camera and would always smile during pictures. Although Miss Ashley B. was quite social even at an early age, she would have uncontrollable periods of screaming. The screaming could last for hours and there was nothing that I could do to console my daughter. I felt so helpless. I started taking her to the pediatrician on a weekly basis, begging for him to help my daughter, who seemed to be in some sort of pain. The pediatrician told me there was nothing wrong with my daughter and that maybe I should take some parenting classes. I was devastated.

As the months went on Miss Ashley B. would continue to have times of either extreme happiness or extreme agitation and although she seemed to be developing normal in many ways, she was still not walking at fifteen months of age. We went to a specialist and were told that it was just taking her longer to learn to walk. At sixteen months of age she started to walk and was still very social. When we went back to the specialist he said she was doing great and right where she should be developmentally. But between the ages of sixteen months and eighteen months, something happened to my daughter. I don’t know where she went, but she left me. She was still with me physically but she would no longer look at me. If I sat next to her, she would get up and move. She started rocking and humming. She was in another world, a world so far away, there was no way to reach her.

By this time I was expecting my second child and I was exhausted and terrified knowing something was wrong with my daughter. She never slept and would scream and hit her face for hours and hours on end. We went back to the specialist when Miss Ashley B. was twenty two months of age. And what we heard that day, the worst day of my life, was that my daughter was “developmentally delayed and would never be able to be on her own or take care of herself.” That day, April 20, 1990, it was pouring rain. I was seven months pregnant and I remember taking my daughter home that day and crying for days. I did not understand what had happened and I could not even look at her. My daughter was gone and she would never return. I was left with this child whom I did not know.

As the months went by, although I could not accept the fact that my daughter was disabled, I did learn to love this new daughter more than I ever could have imagined possible. My son, Grant, was born. A sweet, calm, beautiful baby, who had already experienced an emotional roller coaster before he was even born. Although loved more than life itself, he would unfortunately take a back seat his entire childhood to his sister with so many needs. Miss Ashley B. was continuously losing skills, one by one. She was so frustrated not knowing why she could one day be able to do something and the next day she couldn’t. Slowly she lost all of her speech. Slowly she lost her ability to use her hands. And slowly she would continue to lose her mobility that at one time many years earlier, had been such a victory for us. I was very focused on finding a name for this mysterious disability that had taken my daughter from me, and so the search began. Rett Syndrome was something that was mentioned when Miss Ashley B. was first diagnosed with a disability, but every physician and every hospital that I brought her to, ruled out Rett Syndrome. From the moment I first heard the words Rett Syndrome and read about it, I knew that is what my daughter had. And finally when Miss Ashley B. was seven years old, she was diagnosed at Kennedy Krieger Institute in Baltimore, Maryland by Dr. Naidu as having Rett Syndrome. It was bitter sweet. I had been trying to convince the physicians for all of these years that my daughter had Rett Syndrome but then when a physician finally agreed with me, I wished more than anything that it wasn’t true. And the grieving began all over again. Grieving because by this time, I knew what Rett Syndrome would have in store for my precious daughter.

At nine years old, and weighing only 36 lbs my daughter had to have a feeding tube surgically placed in her stomach. Seeing your beautiful frail little girl hooked up to all of the machines in the hospital was so scary. After the surgery, she could still walk but she had to be stood up as she could no longer get into a standing position. She continued to walk until she was eleven years old and then had to start using a wheelchair. The wheelchair was needed all of the time but for transferring, Miss Ashley B. could still stand briefly. At thirteen years of age, Miss Ashley B. started having non-stop seizures and had to put on seizure medication. She had developed kyphosis and scoliosis and her spine was becoming increasingly curved. She also developed Long QT Syndrome, which is a dangerous irregular heartbeat that can cause sudden death. Although she does still have screaming episodes, they have certainly decreased. And just this past year, after having yearly xrays on her spine, I was told that spinal surgery was necessary. Rods needed to be placed in my daughter’s back to help keep her spine straight.

We were to be in the hospital for seven to ten days. As it turned out, Miss Ashley B.’s lungs became compromised and she was in the hospital for eight weeks on the ventilator and having to have a tracheotomy. I almost lost her several times during those eight weeks. Since the surgery, she can no longer stand briefly during transfers and I have to use a hoyer lift for all of her transfers. She can also no longer roll over and has to be turned every few hours for comfort and to prevent pressure sores. I almost lost her several times during those eight weeks. But she fought hard and she is still with me. I have never met a stronger person than her. So frail but yet so strong.

Having a child with a disability is something that cannot be understood unless you are living it. It involves countless school meetings, and learning to advocate and fight for services that your child needs. It involves scheduling your life around doctor appointments and never being able to get proper sleep. It involves worrying about who will take care of your child should something happen to you. It involves not being able to spend as much time with your other children and struggling to somehow show them that you love them just as much and that they are as important as your child with special needs. It is financially and emotionally draining. It involves everything taking twice as long to do. It involves having to have a respite worker with your child just to run a quick errand. It involves planning every aspect of your life around your child’s schedule. And not just during their childhood, but forever. It involves seeing your child discriminated against at times. It involves your child, after finishing school, to just sit home all day because there isn’t any type of day program in your area. It involves seeing other children doing things that you only dream about your child doing. It involves letting go of all of the hopes and dreams that you once had so many years ago. It involves seeing your child suffer mentally and physically on a daily basis.

But………………….it also involves learning to love unconditionally. It involves learning to appreciate the small things that so many people take for granted. It involves digging deep within yourself to learn to accept what is and not what you thought should have been. It involves rejoicing seeing a little smile on your child’s face and celebrating every milestone, regardless of the size. It involves exploring who you are and learning who you are. It involves finding strength when you feel so weak. It involves being able to steal hugs from your child at any time. It involves having a best friend for life and having someone who truly loves you and appreciates everything you do. It involves……………………JUST BEING.

**Stop Seizures Now Blog: With special thanks to mom Lisa, who is an incredible lady, that we should all be proud of. She does not understanding the meaning of quit, rather doing. Her son is a good man of fine character, and Ashley is a young lady whom deserves our respect and compassion. Way to go Lisa!!! You have an excellent family, and have made so many more aware of this condition, and the challenges and rewards of such a diagnosis.

A Lot of Families are in Pain Right Now: Facebook Helps

2011-09-12T18:25:00.000-07:00

The death of a child is the worst event that can happen to a parent. There is so much anguish, deep pain, and so many dreams shattered that it seems impossible to pick up the pieces. Yet there is hope, and as the father of a child whom went to God far too early, I am thankful for Facebook. Yes, the social media site, that is either loved or hated, but nonetheless changed the landscape of how folks from around the world communicate. During the hardest period of time, after burying my son, Facebook became instrumental to reaching out to others, and to have people talk to me. I didn't feel like talking to people face to face, or even over the telephone. It was just too painful, and while I still continued to love folks I knew all of my life, and others that I would soon get to know through this medium, I retreated into a shell.

That was in my house. I didn't want to go out anywhere, as I worried that I would just breakdown, or run someone off of the road by my "not giving a damn." Yet through Facebook and emails, the darkest hours were at least opened by a channel on the 'net," and provided much comfort during this time of grave indignation that just seemed to linger in every inch of my consciousness. Right now, families that have gone down the same road, are being helped by Facebook. People are able to send them heartfelt condolences, messages of support, and also let them know they are not alone, even though they feel that way right now. Others whom have lost a child have told me the same thing. They didn't want to speak to anyone personally, but behind the scenes of a computer, they were able to convey their pain and commiserate with others.

Each person handles the loss of a child differently. There's no right or wrong way, as long as you don't harm anyone else or yourself. It is okay to cry, to question everything that you've held to be true, to have anger, sadness, and guilt. Each of these are completely normal, as an event of this magnitude will rip your soul apart. Yet with time, and with Facebook, you can use these tools to not be isolated. There will be times where you will want that, yet sometimes its good to touch base with others when going through such a traumatic event. Is Facebook the only internet platform? Nope, there are blogs and traditional emails, but Facebook is good due to this being able to find online support forums and resources during these times. The road to recovery is a long one, and while you shall not get over the loss of your own flesh and blood, you shall get through it. Facebook deserves kudos for the service it provides to families in grief. I am thankful for it as are many others, all across the globe.

The Angel Quilt Project

2011-09-09T00:57:00.000-07:00

http://www.facebook.com/pages/The-Angel-Quilt-Project/267961783227848#!/pages/The-Angel-Quilt-Project/267961783227848

There is nothing worse in the world, than having to lose your child. We often complain about the most trivial of things, such as a bad day at work, or that the lottery ticket was just a few numbers off from winning some serious dough. Times are indeed tough for a lot of folks right now, but when you look at the grand picture, it is imperative to count your blessings. I do more now so, after having my perspective changed, with the loss of my son Tommy. He passed away from a seizure in 2009, and while I cannot say that I don't complain about being stuck in traffic or other things, I have come to the realization that there's so much in life that really doesn't matter. It is trivial, and even if having a crummy day, it is important to at least find something positive about it. That could be something as simple as "I have a job," or "Thank God today's almost over." These changes have really helped, but unfortunately I have not as yet learned how to forward the clocks.

The link up above, just take a look at it. This is a creation based out of love, that Susan was able to come up with, and she is an Angel Mom and a woman who has a big heart. She came up with the concept of quilts, throws that would be created for those whom have lost a child. This would include a picture of their angel whom certainly is in Heaven, surrounded by other children whom have Angelman Syndrome. (Angels). It would show them that folks around the world, and other angels care very much about their little one that has gone to God far too early, and that they are not alone. Alone. Yes, that is the feeling of a parent after going through such an ordeal. I felt that way for a long time, as modern medicine is so cutting edge, that certainly no other parent had to contend with such things. Yet walks around my son's cemetery, and meeting so many other folks has shown me, that I am not. In fact, its more common than we would like to admit, but it is the sad reality for a lot of people, that at this very moment, would be comforted by a quilt or throw.

Please help the Angel Quilt page by liking it, and although its still a work in progress, sign up to help. Quilters are needed, donations are, or by helping to let others know about it, we can all play a part in this. That parent going through such tribulations, will be directly impacted by your kindness. Think about that Mom or Dad receiving that quilt, when they feel alone, in such pain, and what it will mean to them. Sure, they are not ever going to get over the pain, but they shall get through it. This will help in that process, and be a physical way that they can both see and touch the love that is being sent their way, when they need it most. We are all so interconnected, and soon a paypal account will be set up for materials. More quilt warriors are needed, but there are a few signed up. Let's do this, let's make this happen, and show these parents that there are people all around the world, coming together at their time of need, to let them know that they are being thought about. It means so much when you are at the time of your greatest heartbreak, the loss of your own flesh and blood, and its a way that you can show all of your love to a family crushed.

Carrying Your Child's Casket-The Weight is on Your Heart, Not Your Shoulders

2011-09-07T13:53:00.000-07:00

This past week I spent some time, just quietly reflecting at my son's grave, and walking to the Oak Tree that's about ten yards away. It overlooks so many graves, and often I think about those other parents, whom I sometimes meet there. A lot of time it is empty though, and that seems to be the feeling when sitting on a nearby bench, listening to the wind chimes that families have placed upon the trees branches. Death is an uncomfortable subject, its not like discussing a favorite basketball player's triple double, or that the weather appears to be changing. Its a word that is synonymous with pain, tears, love lost, dreams crushed, guilt, and gloom that just seems to be a albatross around your neck. Its always there, and as I looked upon the sheer number of graves on my last visit to where Tommy is buried, I was struck by the sheer amount of little ones whom have gone to God far too early. There are hundreds of them, and I spent some time reading them.

There's not a lot of information on them. A name. Dates of birth and the day that little boy or girl was called home. Some having sayings on them, and there are a few that provide some solace during these walks in this place, that is beautiful even in the midst of heart pulling pain. My son's grave is close to the memorial hall where his service was, and looking at that building, I don't think I'll ever be able to walk in there again. I remember the funeral director, whom I greatly admire, as she has a special needs child, closing his casket. It didn't make any noise, it was silence aside from the tears of family members falling down their cheeks. Carrying my son's casket out the room, and down into the waiting limo was so painful. It wasn't the weight of his remains or the coffin itself, rather it was the weight of the pain on my heart, and the rest of my family's.

There are families right now going through this same experience. They are having to bury their loved, cherished babies. The pain of picking out clothes, coffins, and shoes and toys to be buried along with their child is a punch to their soul right now. They are going to have to make arrangements that they never could be prepared for, and may they find comfort one day in walking around where their little one rests. I never thought a graveyard could be a place to find refuge, but it is. I have seen all of the markers, and know that I am not alone, nor are these families whom recently have had to go down this road that no one wants to. At Tommy's grave, I have witnessed kindness, such as a young man putting back the flags after a storm. Hopping off his bicycle, in the middle of a workout, he didn't see me or anyone else. Yet I saw this act, and it made me smile, as it provided hope. The gentlemen whom tend this area are kind folks, and I am thankful for them keeping this area a sanctuary of reflection, that involves tears, depression, but also some smiles looking back at my boy's life. May these families find this to be the case one day, because while the pain will never go away, may they realize that they are not alone.

FAST (Foundation for Angelman Syndrome Therapeutics) Wins Vivint Contest

2011-09-06T17:08:00.000-07:00

This past weekend, has been painful for the entire Angelman community due to children losing their lives to accidents and seizures. There have been a lot of tears, as if there wasn't already buckets enough over the years, but today was a reason to celebrate. FAST, Foundation for Angelman Syndrome Therapeutics, is an all volunteer organization that is working on finding a cure for this condition, which is caused by a partial deletion of chromosome 15. Today, due to voting of so many in the Vivint Company's contest, they have secured $250,000 in grant money to work on making a cure a reality. This is joyful news, and I make no bones about it, there's going to be a fine cigar lit up in celebration tomorrow due to this. To all of the families across the world that have an Angel or whom have been touched by one, this is a day for the history books in folks becoming empowered ,and this condition becoming much more understood as well.

I watched with anticipation on Vivint's internet feed, to see the Chairperson of FAST make a speech on behalf of this donation from this company, that truly does understand the importance of giving back. Other charities whom were helped by Vivint spoke about their organizations, and there were plenty of moving moments, and I was both crying and smiling at the same time seeing this. When Paula went on the stage, she spoke for the thousands of families across the world, and for angels as well, and although you couldn't see the halo, it was there. Her remarks were very touching, and I hope one day to get a chance to personally thank her, but for now this will have to do. The same for the sales staff and technicians, and all of the other employees at Vivint. Gosh, I hope I can thank you, and please understand that you might just get a hug. To know that salesmen and technicians, even in this tough economy were willing to donate commissions from hard earned sales to this effort, says a lot about their character.

Today is a good day. I look forward with anticipation, to seeing an already fine organization get even better, and grow in strength and influence. FAST is no doubt full of loving parents, whom want the best for their children, and that is a cure. This is one step closer to becoming a reality, due to the numerous folks across the world, who voted and partnered up with the compassionate souls at Vivint. There are celebrations tonight from numerous countries, and in the hearts of many people. Godspeed FAST, may you succeed in this endeavor and in others, and to an angel mom and all of the folks that participated in this, thank you for making the dreams of so many come true.

A Ride Home, My Son in the Morgue

2011-09-06T01:39:00.000-07:00

The pain of November 4th, 2009 will never go away. A lot of events are simply erased from my memory, or in crushed, little pieces from that night. My son's body, CPR, flashing blue and red lights, panic, anger, shock, and a stupid red book on grief. After hours awake I finally laid down in the bed. How could I be in the bed while my son's body laid in a morgue? Alone! My boy was completely alone, and although I never set foot in here, him lying in a storage area surrounded by the bodies of others.

He was not alone, as He had already gone to Heaven, his body just being the physical remainder and his soul already with God. Yet I remember sitting upright sweating, thinking about this, and what a horrible feeling it was. Just a short time ago, I had wished him a good nap, and now he was dead. That's right, gone forever from our lives, this vibrant boy whom loved to smile and laugh. A house that had been full of laughter had been changed to one with a drapery of pain, a place that I wasn't sure I could even stand to be in. My son wasn't in the house, and although I couldn't sleep well, I did from pure exhaustion of which I had never experienced.

Right now, there is the body of a child in a morgue. There are families in grief, just grasping the fact that their lives are not going to be the same. All of their dreams, their children they have cherished and been through so much with, are gone. The initial shock of losing a child is different for all people, as we are all individuals, yet at the same time there is a shared pain. The past week has been especially hard for three families, one of whom lost their daughter in a tragic boating accident yesterday. They have to face a new reality, one that they might have thought could happen, but now realize it very much does so.

Their spirits are hurting, the very essence of their lives missed. In the coming days, they are going to have to go through even more pain. They are going to have to select clothing that their child wore, place it upon them, and say goodbye again. There will be tears, and a glassful of pain, that's going to seem as if its not ever going to be empty from all of the crying. Waves of pain will hit them as if its a tornado, followed by moments of reflection, and also levity. It is a strange process, but I hope they will be comforted in knowing they are not alone. This new reality stinks right now, as it always will. Yet the "new reality", may also teach them new lessons, albeit painful ones that cut right to their souls. Yet, even with this hurt, may they know that they shall get through, not over this. Along this road, this one full of pain and a knife to the soul, they will find out how much they loved their children, how many love them, and rest assured that your little boy or girl is no longer in pain. They are with God, and its okay to be angry with God as well. That's proof of His existence, and that your child is not alone, nor are you.

Death: The Harsh Reality

2011-09-05T05:28:00.000-07:00

To answer some folks question, yes the passing of two children of seizures this past weekend re opens some wounds, but our hearts should be with them at this time. They are the one's whom are suffering, they are in immense pain, and they are the ones who need to know that they have people praying and crying alongside with them. All of us are going to die, and while this is not a comfortable subject, it is the reality. We do not know when we are going to be called home, as that is up to God and God alone. This is one of those times, where we have to take our hands off of the steering wheel, and just accept that sometimes God's wishes don't coincide with our own. When an older person passes away, we are able to celebrate that person's life, and while we will miss them, its much different than when a precious little boy or girl does.

Right now those two families, are in our hearts, as they are going through what can only be described as pure hell on earth. There is no worse pain, no more lonely of a feeling, it as if you've died yourself and your soul is crushed with a magnitude of misery that never seems to end. Emotions are all over the place, if you can feel them, but the prevailing one is shock. Nothing in your life prepares you for burying your own child, its against the grain, against everything we hold to be true. Yet it happens, as has been the case this past weekend, that has left two families grasping at everything they once believed in. Their hopes and dreams have been crushed, siblings are left without a cherished brother or sister, and they now as families have to do what you would not wish upon an enemy. That is to bury their own flesh and blood. Their babies. Their sister. Their brother. Nephew. Niece. Friend.

These families must feel our prayers right now, as they are experiencing gloom that is to hard to describe. When my son passed away, I just felt more alone than ever before, that the world had been turned upside down. I will never stop crying, nor shall these families. They will never get over it, yet my hope is that they shall get through it. This won't be easy, as the road that lays ahead of them, is going to be full of explosive charges and pitfalls that can best be called harrowing, and full of anguish. Each person is different, and handles such an event on an individual basis, but these families need to know that they aren't alone, that they have the support of family they didn't know they had. I don't know if others whom have been through this, and there are many, have felt this, but in my darkest days, it was if being kicked in the soul, and the pain emanated from everything and everywhere.

My message to these families is simple. Love one another. You are going to go through all kinds of emotions, anger, guilt, sadness, frustration, angst, anxiety, and so many more. There are going to be periods of time when the pain has a railroading effect, and there's no time frame assigned to it either. You shall not get over it. You shall get through it. Right now you are in the opening stages of a long road, and along this path, you are going to have to question everything you once believed, and face a new reality. Is it going to hurt? Yes. Yet at the same time, you are going to learn lessons that you never thought possible, nor wanted. And that is okay. Look out for those angels among us, and hold on to what they say. You might not catch what they are saying at the time, but look back at this when it is the right time, and know that you are never, ever alone in your pain. People across the world have been in these shoes, and while you cry and question everything from the value of life to faith, know that you shall overcome this crushing blow, and carry on. You shall stand upright again, and although there will always be a break in your heart, your spirit shall return in a new form. You will one day be reunited with your little ones, when God calls you home. He has them in the palm of his hands, and they are loved with such a passion, that does not exist on Earth.

Led Zeppelin's "All of My Love" : A Song Can Change With Time and Pain

2011-09-01T07:12:00.000-07:00

Led Zeppelin has always been my favorite band, as their musical talents, are without needing to be even discussed. Their influence is even more so than the Beatles and bands from previous eras, and the vast majority of their songs I have always just been smitten with. Yet "All of My Love," was one that I never could get into until recently. Robert Plant lost his five year old son as well, and this song is a perfect representation of what a father feels after seeing his little one go to God far too early. Its painful to listen to, yet at the same time, it also provides some comfort due to Plant's passion, and the talents of band mates Page, Jones, and Bonham. If you are near a computer or have the CD, crank it up, and if you want to hear love, the 4:00 mark where Plant just wails "All of My Love," will aptly produce the dark shadows of missing that child of yours.

The lyrics of "At last the arm is straight, the hand to the loom, is this to end or just begin?" are so true. The pain never goes away ever. You never get over the passing of your child, finding them unresponsive, and having to just go through that knife in your soul, that just makes you bleed without the veins being cut. It tears you apart, and while there are good and bad days, that lyric of "is this to end or just begin" is a constant battle that you must face. You can get through the passing of your child, that is very much true, and face perilous days that make you question the existence of everything you valued previously.Your life will never be the same, yet it does not mean that it has to be a horrible experience. Instead, you must reflect on what is really important, and that is to continue on in the battle of life, as each day brings new challenges, but also possibilities. Each day is a blessing, whether good or bad, and full of valuable lessons.

So if you can, listen to that song, and hear Plant's heart pour right out on those vocals. With that voice, and the power of that song, be sure to give your son or daughter a bigger hug than ever, wrapping your arms around them to know that they are loved so very much. God works in mysterious ways, some of which coincide with our wishes, some of which are simply out of our control. I am not angry at God anymore, rather just a man whom misses his boy, and finds simple joys of a hug that much more fulfilling than ever before. In a couple of months the passing of Tommy's day will no doubt be painful. It is going to be rough, and the start of another chapter in life continuing on, through a cascade of emotions. Yet, his legacy lives on, as each of us only have a limited amount of time on Earth before being called home. Its what we do with that time, that really does matter, and none of us has to do anything special or over the top. Instead, what we can do is support each other, value the sanctity of life, and that each day begins anew. "All of my Love, All of My Love, All of my Love to You."

Earthquake in Mineral, Virginia: Affects the DC Area and More Just Like Seizures

2011-08-24T16:11:00.000-07:00

The earthquake in Mineral, Virginia on 8/23/2011 was a rare event, and I am thankful that only minor injuries and damage have been reported. At the time, I was sitting in a car, and it felt as if a really strong man bounced my car up and down for about twenty to thirty seconds. Then I saw people running out of a nearby building, and I realized, it was an earthquake. A unique experience, that you cannot predict. In a way, an earthquake is a lot like seizures, that affect many. Roughly 3% of people have seizures, and they can come on at any time, without warning.

Seizures are a serious medical condition. Some have tried to write them off as a "minor issue," but there's nothing funny about them. They have caused lots of children to be in Intensive Care Units, ambulance and paramedic services to be utilized, cognitive effects, induced coma's, or in some cases death. That's right, gone forever. When you see your child, seizing up uncontrollably hundreds of times a day, there are no words that can ever be written, to describe such wretched misery. When a parent has to bury their little boy or girl, it is a crushing of the soul, that causes their hearts to be scarred forever.

So what can you do about it? Get involved. Learn about seizures, and help folks like the Vanderbilt Kennedy Center's Angelman Seizure Project. There are numerous types of seizures, and just like earthquakes, they vary in intensity and periods of duration. These unpredictable events create seismic levels of pain to families across the globe. Yesterday's earthquake in Virginia was a minor blimp. Yet seizures are not, and that is why they must be cured with due haste. Parents and their children are counting on you right now, whether it is spreading awareness, holding fundraisers, or helping those whom are contending with this issue. God bless the brave souls whom deal with seizures on a daily basis, and those who love them. Everyday they have earthquakes, that are far more painful, and lead to irreversible damage.

"Are you better off than you were a few years ago?" The Angelman Community Is.

2011-08-19T17:58:00.000-07:00

There has been so much blood, sweat, and tears in the Angelman Syndrome community. At the same time, there have been some smiles. Its been no easy endeavor, but what in life is? Upon receiving my son Tommy's diagnosis in 2004, huge strides have been made in generating awareness to doctors, schools, counseling groups, and the general population. Is there work still to be done? Yes. However, families that have a member that has Angelman Syndrome, or friends of these families that do become family as well, have had their lives greatly enhanced by folks such as the Angelman Syndrome Foundation, Foundation for Angelman Syndrome Therapeutics, and the Vanderbilt Kennedy Center. Our family was blessed to have had a pediatrician whom had another "angel" in this practice when we got the news that Tommy had Angelman Syndrome, but others have not been so lucky. There are still folks out there that haven't received a diagnosis, which is devastating, but the chances are much better now.

Is it great to hear that your little boy or precious girl has Angelman Syndrome? Nope, it cuts to the very essence of your soul, as all of your dreams are thrown aside. Yet it is better to contend with what you know, and how you can be of the most benefit to your child. Years ago, one would have said "huh?" with regards, to finding out information about Angelman Syndrome. Our pediatrician gave us some of the particulars, a geneticist helped us grasp concepts that my wife and I were not able to handle at the time, and the Angelman Syndrome Foundation walk a thon was where I finally felt "I'm not alone." Alone is a horrible place to be, but as misery love's company, there's a lot of happiness at Angelman Syndrome walkathons. Its a place to bond, to get to know other parents, and to learn more about experiences that are often done by "trial and error." FAST has been working on a cure with folks like Dr. Edwin Weeber, and the Angelman Community as a whole has banded together through social media and other means, to become stronger than ever.

All of our hearts, should go out to those, whom never got a diagnosis for what was going on with their son, daughter, nephew, niece, granddaughter, and grandsons. Yet in 2011, a FISH test, that is able to determine if there is a deletion of chromosome 15, is readily available. There are systems in place to help families learn all they can, and all Angelman parents should have honorary law degrees, after doing so much research. Yet even more importantly, Angelman parents have a unique bond, and often are able to provide advice and support to each other. Whether its face to face(most helpful), or through phone calls, and using social media, its able to realize that there are others whom are going through the same challenges.

We still have a long ways to go, but great strides have been made. That is something that all of us can be proud of, because even though we have been tested, we don't understand the meaning of "quit." Instead, we understand "resilience" much more. The Angelman Community is fierce, one devoted group, that shows a lot of courage each and everyday. I am thankful for organizations such as the ASF and FAST, whom both do fine work, along with community and faith based institutions that have lended loving hands of support along the way. A cure has not been found yet, for Angelman Syndrome or its devastating seizures, but with the same love, and battle tested group of families, it shall one day. I have no doubt about that, and we must cling on to that hope, while supporting each other until that glorious day occurs. Rome wasn't built in a day, but we shall advance instead of retreat, march forward instead of holding our position. Nothing short of absolute victory is an acceptable outcome.

FAST must win the Vivint Gives Back Contest: Save the Angels

2011-08-15T15:32:00.000-07:00

There is nothing in the world, that compares to getting the hug from an angel. If you want to spiritually feel closer to God, find a child with Angelman Syndrome, and get a hug from them. Right now boys and girls, young men and women, and their parents, grandparents, aunts, uncles, siblings, and loving school and church communities are counting on you. They want to see their Angels find a cure, which is a reality, as proven by the phenomenal work of Dr. Weeber. He has managed to give a mouse Angelman Syndrome (deletion of chromosome 15), and to cure it. That is breathtaking work, and all that is needed is your help, to make that mouse be a boy or girl cured of this condition forever. God willing, they will be able to walk better, talk, tell their mom's and dad's "I love you," of which so many have been waiting for years to hear. Do you take those words for granted? You would not if you are an angel parent, whom loves your child, regardless of their ability to say these words, but rather to marvel at their compassion, their love of everyone, and their steadfastness in never giving up.

It will not cost you a cent, to make a difference, as the Vivint Company has been kind enough to have a contest. If you log onto Facebook, and vote for FAST(Foundation for Angelman Syndrome Therapeutics), you are helping a much deserving youngster and their parents, get that much closer to a cure. You might end up with sore fingers from typing, but considering it only takes a couple of seconds each day, that's less likely than a paper cut from your letter opener. For some angel families its too late. There are quite a few that have lost their angels to seizures and accidents. Sadly, as we all know time can not be rewinded like a DVD, but a cure would guarantee this from no longer being the case, and could save a parent or young one from a tragedy that is beyond comprehension.

Please vote for FAST on Vivint's Gives Back on Facebook. This security systems company has been generous in helping much deserving charities, but FAST has the ability to save lives with a cure for Angelman Syndrome. There will be no rushing to ICU's, no induced coma's, no loss of life and seeing a child go to God far too early. Instead, there will be joy. Parents everywhere will be able to hear those words, they have been waiting for. That's right, "I love you." Angels will be able to communicate better, make themselves understood, and a lot of champagne will be popped on the day this great discovery is made. So please, let a parent hear "I love You" along with that hug. Show your love, by voting for FAST in the Vivint Gives Back contest. There are so many waiting for those words, and a cure for Angelman Syndrome would be a Godsend folks around the world.

FAST Needs Support in the Vivint Gives Back Contest-A Lesson from the Colonists

2011-08-13T07:18:00.000-07:00

Several years ago, I was in London. That is one beautiful city, full of kind folks, and so much history that I barely slept during the visit. Plus, the fish and chips, along with the pints of beer were of course enjoyed, much to the chagrin of my liver and cholesterol levels. During one stop at a bookstore in town, I busted out laughing. As you can imagine, I was the very definition of a boorish American, not appreciating the nuances of subtlety. An employee approached me, and had to laugh as well, as it was a book on the Revolutionary War. In the print, it read "King George in his royal wisdom, decided to let the colonists have their own country."

The Revolutionary War was full of blood, although not nearly as much letting was done as the American Civil War to come down the pipeline. There were lots of colonists, people of influence even, whom thought they had no chance against the British Empire, with its well trained and equipped soldiers, and sphere of influence around the globe. One of these, whom tried to sell his soul to the devil, no offense to my British friends and aunt who's a citizen there, was none other than Benedict Arnold. He is the very definition of a traitor, and his name is used to this day, to describe anyone whom turns against a cause, or uses unprofessional tactics to achieve victory.

Yet the Colonists, even with shortages of food, water, people, and smallpox epidemics won the Revolutionary War. Take that Joseph Sewall :). The Americans gained their own country, against all odds, which if Vegas existed back then wouldn't be one you'd throw money around on in the wager column. The Angelman Community, which of course is international, is an army of sorts. Yet this one is of loving people, whom believe that a cure for Angelman Syndrome is a possibility. Dr. Edwin Weeber has already found a cure for mice, would you like to go to the tables in Sin City and vote against the concept? I wouldn't, and that is why so many are supporting FAST in Vivint's Gives Back Contest on Facebook. Just like any contest, there are some that like underhanded tactics, but they shall not prevail.

What will, is the good people of the Angelman Community. Honesty and righteousness of cause, is what shall bring FAST much needed funds, from a company that is kind enough to help those who are on the cusp of achieving a "scientific shot heard round the world.". FAST, Foundation for Angelman Syndrome Therapeutics, is chaired by an all volunteer staff, parents of those with this condition, that know the meaning of compassion along with high ethical standards. It is time for a cure for Angelman Syndrome. That is why we must stay the course, as George Washington pictured here, did during times of immense pressure. If a group of "pathetic bandits" as the Americans were then called by King George, can succeed, than so can FAST in this contest with love, determination, and voting everyday.

The Importance of Vivint Gives Back to FAST Contest

2011-08-12T15:29:00.000-07:00

The next two weeks, it is imperative that you vote for FAST (Foundation for Angelman Syndrome Therapeutics) in the Vivint Gives Back Contest on Facebook. Its crunch time, as all contests and elections are often coined, and now more than ever FAST needs your help to assist those with Angelman Syndrome, and their families. FAST has had incredible success, in funding programs that are more likely than not, going to lead to a cure for Angelman Syndrome. Wouldn't you like to fight for something, rather than sit down, and just put up the white flag? By taking a moment out of each day, actually thirty seconds or less, you can make a difference. In the Boy Scouts, we used to call this doing a "good turn." That's what each vote is, and each twenty four hour period, you can be a part of such a positive action.

If FAST wins, it will mean a lot to Angelman families across the world. Isn't it great to be a part of something special, that shall assist those who could really use your help? Angelman Syndrome is caused by a partial deletion of chromosome 15, and FAST has helped Dr. Edwin Weeber, with a mouse project. This creature was given Angelman Syndrome, and then cured of it. That is incredible, and breathtaking research, and more will be possible if FAST wins this contest. This is a once in a lifetime opportunity, to help angels, whom are known for their smiles and laughter, have a chance at a better life. Its going to, if FAST wins, provide a lot of comfort to families, whom have known of this love firsthand, and would do anything in their power to help their children, grandchildren, nieces, nephews, brothers, sisters, and friends with Angelman Syndrome.

Thank you to the compassionate folks at Vivint, for having this contest, and for being willing to offer a generous donation to a worthy cause. FAST is certainly a fantastic charity, that has stepped up to the challenge, of finding a cure for Angelman Syndrome. If you have been voting, thank you and keep doing it. For those who haven't had a chance yet, now is your opportunity to step up, and stand united with the Angelman Community that's full of love and dedication. Now is not the time for complacency, or to hold the position, but rather to advance. With each vote for FAST, dreams of so many are closer to becoming a reality.

Seizures Affect Many: Mike Patterson of the Philadelphia Eagles Just Had His Life Turned Upside Down

2011-08-07T05:26:00.000-07:00

Although I am not a Philadelphia Eagles fan, my heart aches for Mike Patterson. This past week, he had a seizure while on the field, and is lucky to be alive. Apparently he has AVM, which is a congenital brain vessel disorder, that caused him to seize up. This event hit him like a lightning bolt, and imagine the devastation of this twenty seven year old man. Here he is in the prime of his life, enjoying the life of being a professional football player, and then WHAM. It could be very much over. All of those years of toiling in the heat, practicing in the trenches, the wins, the losses, all gone in a matter of seconds.

He is among so many of our fellow citizens, that is affected by epilepsy related conditions. Three million plus Americans have seizures, and when you count the numbers worldwide, it is a staggering amount of people. Across the special needs families, its at a much higher rate, and that is why funding is so necessary to find that cure. While Mr. Patterson may have to hang up his cleats, and focus on a life he had never previously imagined, there are children right now being forced into induced coma's to stop their seizures. Some of them make it. Some of them, sadly go to God far too early because of them. That is why it is imperative, that the folks at places such as Vanderbilt Kennedy Center's Seizure Project, get the help that we all can deliver. It doesn't have to be much, because every bit helps us get to that goal of defeating this menace.

Today Mike is waking up to a new reality. His whole life has been changed in such a way, that it is going to cause pain for him and his family. Every dream he had of playing on the gridiron is now out the window, and I pray that neurosurgeons can help him out. Right now he is suffering, as are so many, and it is our moral duty to make sure that a cure is found. Doctors around the world are working on this issue, but the lack of funding towards this issue compared to others, is in stark contrast to what we all want. Seizures have caused so much pain. They have taken the lives of children, my own boy, and so many others have had to go down this road that has so many bumps and stabbing pain. Seizures have sprung up on people like this, and made their lives more difficult, taking away their driver's licenses and ability to live independently. I wish nothing but the best for Mike and all those who are contending with seizures right now, because this condition needs a cure, and it needs it more than ever.

A Pickup Truck and the Amish-What Do They Have in Common?

2011-08-05T17:26:00.000-07:00

This past January, I went out to start of my pickup truck parked in front of my house, due to having some errands to take care of. Upon walking up to it, I saw that the front driver's side was all smashed up, and a few colorful words were said. I was furious, and as I noticed no note with a person's information on it, I turned a shade of red brighter than the finish on the hood. For half an hour, I seethed with anger and hatred, wanting to beat to submission the individual who had the audacity to hit my car, and at least not have the courtesy to leave their insurance policy or a phone number to reach them at. The level of rage was so livid, that I waited a half hour, before I called my local police department to report the hit and run. Pieces of a motorcycle told me all I needed to know, and after taking my information, I called the insurance company to pay $250 for some inconsiderate worthless pond scum's responsibility, so that my vehicle could be repaired.

A few years ago, at an Amish School House near Lancaster, Pennsylvania, a disgruntled milkman went on a shooting rampage. He killed a number of little boys and girls, which devasted the tight knit community up there. As many know, the Amish do not use technology, ride horses with buggies attached to them, and are completely self-reliant. They had every right to be angry, furious at this man whom killed their babies, and then put the gun to his own temple and pulled the trigger. However, they did as Jesus commanded, which is to "turn the other cheek." As we all know, Jesus nailed to a cross, said "Forgive them Father, they know not what they do." This crazed man's family had a small funeral for him, where he was buried, and these Amish parents showed up to pray for him. They prayed for the family, and assisted his wife and children. If that is not what Christianity is about, then I do not know of any better example of it.

I wish I could be as good of a Christian as they are. Turning the other cheek, especially in such painful circumstances as they had to go through, is something that I cannot imagine. While I would no doubt feel sorry for the man's wife and family, as they had nothing to do with what their husband and father did, I know for a fact that I could not do as they had. They still continue to support this family. My pickup being hit was no big deal. Sure, throwing $250 dollars down hurt economically, but I never thought about that individual who hit my car other than hoping "he better have a really bad headache after running into it." Now looking in retrospect, I should have instead thought, "I hope he's okay", and just dealt with the trivial matter that it was. Perhaps his motorcyle was ruined so badly, that he couldn't go to work, and support his family. I will probably never find him, but if I do, I will inquire about his health now, instead of just rushing to anger.

Faith is a work in progress. None of us is perfect, and my getting angry over a object getting smashed, is nothing compared to the pain of finding out your child has been murdered in a vicious, cold hearted manner. Yet the Amish showed what faith is about, real Christian values, that I have to admit have made me realize that perhaps I should learn how to "turn the other cheek, no matter if wronged." Often I think about that scene in the "Passion of the Christ", where Jesus who had been beaten for days, and hung up on nails to that cross, and think why did he die for me and all of the troubled souls on Earth? True faith.

Winc 92.5 FM Steps Up Angelman Syndrome Awareness

2011-08-05T17:07:00.000-07:00

Radio stations play valuable parts in our community, whether they provide news coverage, or music to keep us from going nuclear while sitting in bumper to bumper traffic. One of these is Winc 92.5 FM, which I listen to frequently, due to their mix of various genres, and the fact that they have a great signal in Washington D.C. Yet, they are based out of the Shenandoah Valley, which makes that even more impressive, but they were lucky enough to get a tower at such an altitude that it guarantees a bit of a bounce with a cup of coffee each morning. Their "Facebook Friday" contests are fun as well, as every time that is on the calendar, they have hour giveaways to fun places for families to enjoy. These are usually local attractions, which are more important than ever, with gas prices being what they are, and budgets being tight.

This past week, Robert Allen, their program director was kind enough to allow me to explain Angelman Syndrome, Tommy's life, and the Angelman Syndrome Foundation with his listeners. He is a good man, and a lot of fun, and I'm appreciative that he was able to do this over the phone instead of having my truck guzzle my wallet even more than it already does. This interview was my second one on the radio, and while it is still a genre that I am not completely comfortable with, Robert put me at ease. Thank you to Winc 92.5 FM and to Robert, for understanding their importance to the community that listens to their station. Here is the interview, and its with extreme gratitude, that this event was able to take place.

http://www.4shared.com/audio/jt5TcdoM/rossinterview.html

Signs of Purpose: Help Vanderbilt University's Kennedy Center Seizure Project

2011-07-31T06:12:00.000-07:00

By all means, feel free to check out http://shop.signsofpurpose.com/. This is where you can order "Suck Feizures" stickers, that both look cool, are of high quality, and are made of love from proprietor Bridget. I have ordered two small ones, and a huge one, and am quite satisfied with them. What makes me even more happy, is Bridget's kindness in donating proceeds from these orders to Vanderbilt University's Kennedy Center's Angelman Seizure Project. At this moment there are kids with Angelman Syndrome and other conditions going through excruciating seizures, that affect their cognitive abilities, and are causing their parents a lot of stress. As a father who lost a child to this menace, I am proud of Bridget for creating a high quality product, that goes to help out the researchers at Vanderbilt, who are working around the clock to find medicinal combinations that guarantee that another parent will not watch their child go to God far too early, and eventually lead to a cure.

Suck Feizures is a bit harsh, there's no doubt, but its a phrase born out of anger towards seizures, yet with love and a determination to see them destroyed. For those whom do not like this phrase, there are ones that simply say "SF", and they will look cool on the back of your car, or anywhere else for that matter. You can order with confidence with http://shop.signsofpurpose.com/. It is safe, and you are in addition to getting excellent products, making sure that parents around the world know you are united with them. You are also showing children and adults with epilepsy, that you understand their pain, and want to see them seizure free. That means a lot to so many, and the day that I see a "SF" sticker going down the road, I'm going to smile and have a tear out of my eyes at the same time.

Wouldn't you like to be a part of something that special? By ordering from Signs of Purpose you are helping those most at need, children across the globe that are waiting for a day, when seizures won't be a part of their hourly experiences. Yes, there are children who have hundreds of seizures a day. Their suffering cannot be properly expressed in words, but put yourself in their shoes for a moment. Or if your child was going through these, how would you feel? I can tell you firsthand it is heartbreaking and so frustrating, not being able to help your little one, who's seizing up for hours on end. Its even more painful to find your child unresponsive in their bed, and having to do CPR to no avail, while waiting for the paramedics to arrive at your house.

That is why I implore you with every ounce of my passion, to just check out http://shop.signsofpurpose.com/. I hope you will like Bridget's products, and will order them, as I and so many others have. Stunning research is occuring right now, but until a cure is in place, parents are going to continue to worry, "is this the day?" Children with seizures are going to lose their gains they've worked so hard on, such as learning to walk, or skills that have sometimes taken years. Seizures are pure evil, and in order to defeat them, we must use love to help the folks at Vanderbilt's Kennedy Center find the solution. Their team is top notch, and while seriously underfunded, they have already made progress. Now it is time to deliver them the means to cross the finish line, and allow parents and children alike to rejoice in knowing that seizures have been crushed forever, rather than the dreams of so many.

Thank you WINC 92.5 FM and Robert Allen: Shenandoah Valley of VA to D.C.

2011-07-30T16:16:00.000-07:00

As a guy who's stuck in a car for long hours of time, I've always been happy to crank up Winc 92.5 FM. While the station's based in Winchester, a long haul from the confides of the Washington D.C. area, their frequencies strength has no problems whatsover in allowing me to tap my toes to their music. The past few months I have been in contact with Robert Allen, their News Affairs Director, and he's a kind man, whom one day I hope to thank in person. From his pictures, you can tell he's a lot of fun, and we shared quite a few laughs on the phone. This was due to the distance to the studio from where I live, and he showed an immediate interest in doing a show on Angelman Syndrome. He interviewed me over the phone about this subject, saved me a tank of gas, and is directly responsible for making this endeavor possible.

I am grateful for his efforts, as he is going to play this interview this weekend and next on Winc 92.5 FM, as well as two other stations in the Shenandoah Valley of Virginia. There are hundreds of Angelman families in the Virginia/D.C. area, and perhaps there are a few folks whom might get a diagnosis, or more information from this. While I may have not did a perfect job, I did do my best to get as many plugs in as possible for the Angelman Syndrome Foundation, what this condition entails, and how it affects families. It was a much more calming environment from the confines of my backyard rather than a studio this time, and Robert's professionalism and decency, made it go so smoothly. It means a lot to have folks like him willing to keep their word, and to allow a simple man an opportunity to generate awareness about Angelman Syndrome, and the foundation that has been a rock of support in good times and bad.

Thank you Winc FM 92.5 for being a friend to the Angelman Community. The same goes to Robert, who has helped out immensely, and is making sure that it gets a lot of air time. While we do not have the cure yet for Angelman Syndrome, or the seizures, progress is being made on a variety of fronts. With each person who hears about what it is, brings an increase in the chances of this dream becoming a reality. May that happen for those with Angelman Syndrome and their families, along with those who are trying to find a cure for conditions such as CDKL5, Rett Syndrome, Mowat Wilson Syndrome, and other genetic disorders that are becoming much more part of our lexicon than they were in the past. God bless the folks such as Robert at Winc, who have helped in more ways than can be expressed here, because we must do all we can to achieve success in cures and therapies that will help all with conditions that affect their quality of life.

Faith is a Work in Progress: Pain and Glory

2011-07-29T17:52:00.000-07:00

Today was a typical day at work, in that the clock there seems to take longer to move, than the one I have at home. As a person who works in a uniformed capacity, there are some funny moments, but quite often there are incidents that have a direct affect on my faith. This Friday was one of those, as I had to respond to help staff at an establishment, deal with an emotionally disturbed child. Due to privacy I cannot of course disclose where, but I was heartbroken to see this seven year old boy with Autism, screaming and throwing around furniture. My bald head was almost pelted by a chair in the process, and this young man continued to scream and act out of control for nearly an hour. This wasn't my first call for such an event, and it probably won't be my last. Yet this one really hit me at a level that none has before, as this young child had more anger than I've ever seen, and strength that defies conventional logic.

After turning this child over to his mother, I left deeply shaken. My mind instantly went to "how can God allow for this young man to suffer so much, or the burden that his parents must face on a regular basis." I sat in the solitude of my car, and although I did not weep, it was a close call. It was more of a shock than anything else, and in addition to a pounding headache from his screaming, I started to question my faith. While that is not frequent, it does happen from time to time. Faith is a work in progress, and after spending a few minutes quietly reflecting on this incident, I went to a Subway restaurant for lunch. In front of me was a sweaty man, who had a t-shirt on for a lawn care service. He asked me if I wanted to go ahead of him, and I demurred thanking him for his kindness, and he told me "God is great." On a 100 degree day, this good man was at the right place at the right time. As I waited for my order, I saw him praying to God before eating. I couldn't help but thank him before leaving, and he looked at me and said, "Due to the love of God, if I don't see you around here another time, I'll see you in Heaven one day."

Later on in the day, I met a lady who told me about her son. She told me about how proud she was of him, and I'm not easily impressed, but her "service above self" approach brought me back into the fold. Her son graduated from college recently, just completed his first year of teaching, and has chosen to work with the "most difficult of children." He has taken a lot of them under "his wing," and still goes down to his college town on a regular basis, to continue his mentoring program. There he engages teenagers by teaching them how to break dance, and usually the next day, their parents show up. The parents join their children in learning how to do various dance moves, and she told me of how she believes in helping others. An example of this, is how her daughter whom she should also be proud of, stood up for another girl who was about to get beaten down for no good reason. Her daughter also showed the iniative, of getting her parents to teach another young person how to drive, so she could become more productive by getting a job while going to school.

God works in mysterious ways, and today was a good day after all. There are bumps in the road, where our faith is tested. Some days, to quote a commercial, "are better than others." Yet each day begins anew, with possibilities and chances to have your faith strengthened. Sure, it can be a bit like a rubber band at times, but you always come home to the Holy Spirit that surrounds us at our most difficult of moments. I pray for that young man, and his family. I also pray for this kind woman, who has shown her children the proper path in life, and that man who works for a lawn care service. They are examples of faith in action, and I very much am appreciative for them today. Our actions have a direct effect on each other, and through God's love, we can become not perfect, but at least content and know that we can accomplish much more with faith than without it.

Dr Jonas Salk and Polio-The Impossible Cured

2011-07-26T17:24:00.000-07:00

Polio is still present in the world, as a horrible viral infection, that can lead to paralysis, and in some cases death. In most countries, it has been completely eradicated, due to the work of Dr. Jonas Salk. It has been around for centuries, yet appears to have been a major concern from the 1800's, and wreaked havoc in the 1950's. My own grandmother had polio, and while she recovered from it, had several health effects for years after contracting this disease. It was thought to be "impossible" to find a cure for this, and many tried and failed to come up with a cure for it. However, researcher Dr. Salk made the "impossible possible." He was able to create a vaccine, that prevented it from attacking your body, and we should all be thankful for his dedication.

All of the critics, the naysayers, were proven wrong that it would never be stopped. It was, and much like other diseases, it has been eliminated as a cause of suffering and premature death. So what does this have to do with seizures? A lot actually. While they are two different ailments, Dr. Salk found a cure for what was supposedly "not going to happen." Right now researchers at places like the Vanderbilt Kennedy Center and others are working around the clock, as while we should be thankful for medications and surgical procedures, it is simply unacceptable for a young person with seizures to be put into induced comas to stop seizures. It is unacceptable for a young boy or girl, as each human life is precious but especially a child's, to be ended so soon by these abnormal signals to the brain.

Recently, there has been a lot of good news on this front. While a cure hasn't happened yet, it is in the realm of possibilities. The last twenty years of medical research, have led to breathtaking improvements, that also are possible due to advancements in technology. Awareness has played a huge part as well, because people are realizing the seriousness of what seizures can do to a child or an adult. That is why I have hope, because of people like Dr. Salk and researchers today, and what they are doing to make what was impossible much more likely. We must remember the fallen, those who have gone to God far too early from seizures. They must be in our hearts, and a reminder that we cannot ever give up, until a cure is achieved. Godspeed to those working on this right now, because while your coffee cups are constantly being filled, it is through your dedication that these seizures will be destroyed, and what will be left is peace for so many, and those who love someone who has this condition.

Thank you to Mix 107.3's Tom Grooms and the Spectrum Program: Angelman Syndrome, Seizures, and Much More

2011-07-23T11:49:00.000-07:00

Although I have done a television interview about Angelman Syndrome before, my first radio interview was much more nerve racking. The day started out calmly enough, as I was off from work, although I did not get a lot of sleep the night before. A bit of play time at Dave and Buster's, basically the adult version of Chuckie Cheese playing skeeball and other games while having a beer, calmed me down immensely. The drive into D.C. was a whole other adventure all by itself, because coming in through Maryland, required putting the "pedal to the metal," and driving down the narrows lanes of Wisconsin Avenue through the busiest part of the Nation's Capital. After a another couple of hours of taking a walk, that was possible due to the kindness of a security officer in charge of the stations parking garage, I sat down with Tom Grooms and his show the Spectrum. This was aired on WMAL AM 630, 105.9 the Edge(my personal favorite), and Mix 107.3, all of which are owned by the Citadel Broadcasting Corporation.

Tom is truly a kind spirit, and put me at ease before our taping started. He is a professional in every regard, and came up with a way to help me prepare for this interview. A big thanks also goes to Devar Burbage from the Angelman Syndrome Foundation, whom is now my "new muse," and "safety system," in many ways. Sitting in the studio was interesting, as I was in a soundproof room, that was tiny, and in front of perhaps the biggest microphone known to humanity. It was a bit intimidating at first, but thanks to Tom's guidance, the interview went fairly smoothly. With more experience, I hope that there will be improvement, but it is so kind of Tom Grooms for making this happen. Three stations on a Sunday morning played this show, which has a link down below.

I would like to thank a kind New Zealander named Darren Humphries. He is an angel on Earth, as he has also faced the pain of losing a child to seizures, and has continued Elijah's legacy with grace and courage. Darren was able to reach out to me after I lost my son Tommy to a seizure, all the way from across the globe, which is proof that love and compassion have no borders, nor is it hampered by distance. He also made this recording link possible, as he helped guide my lack of technological skills with Skype, and produced this from a CD given to me that was kindly recorded by Tom Groom's son, whom I had the pleasure of meeting while in the studio. Without further adieu, here is the program, and thanks to all whom made this happen. One day a cure for Angelman Syndrome and seizures that affect not only angels but kids and adults that have other conditions, will be discovered.

http://www.4shared.com/audio/EV9nTKTb/Mike_Ross_Radio_Interview.html

Anniversary Dates are Painful Reminders, but also Times for Hope

2011-07-20T08:08:00.000-07:00

July 21st 2011 will be just another day, the sun shall rise, and it shall set. People will go to work, vacationers will play on surfboards in the ocean, and traffic regardless of where you are shall be backed up. For our family it is a solemn date, as it would be Tommy's seventh birthday. His body lies six feet deep near a Pine tree, yet I have no doubt that he is with God, as he is now an angel in Heaven as he was on Earth. There will be tears, but there will also be smiles. It will be a bittersweet day, and I'm going to look into his younger brother's eyes, and look at him and see the closest thing to Tommy I can see for now. He is still too young to understand about his older brother, but as he grows up, he's going to learn all about him, and all of the lessons that he taught us.

In honor of Tommy, we are probably going to the pool where he learned to walk for the first time. The other day we were there, and seeing that area brought a whole bunch of emotions. It was not easy as I glanced over there remembering that summer day in 2009, yet after awhile I went over there. There was some comfort thinking about that day, and how Tommy walked strong, with courage and determination that I shall never have. He walked across the living room his last week, and proved that he stood strong, and didn't let any obstacle get in his path. I'm extremely proud of him, think of him everyday, and while tomorrow is a painful reminder, its also a day of hope.

The past two years, there have been developments in seizure research. A mouse has been given Angelman Syndrome, and cured. While there's no cures yet for the seizures that took Tommy's life, there has been breathtaking research with new pharmaceuticals and a project that showed how to cure seizures in various parts of the brain. I have no doubt that there will be a cure. It cannot happen fast enough, but I feel confident in what the folks at Vanderbilt's Kennedy Center and their Angelman Seizure Research Team are doing. There are other efforts going full throttle in the United States and abroad, and while it is too late for Tommy, I will be more than happy to fire up a cigar, drink a bottle of beer, and smile a huge grin the moment this event occurs. It will be a momentous day, when parents who've watched their children with Angelman Syndrome, Rett Syndrome, CDKL5, Mowat Wilson Syndrome, Heller's Syndrome, and other conditions can at least live without that worry.

I am a simple man, and will never be a doctor. That's okay, because even if I was, I'd still be last in the class, but of course called "doctor" regardless. Yet, often I pray and keep feeling the holy spirit saying "go, go, go, go" and "never give up." Tommy never gave up. Nor shall I or the legion of parents whom have to face seizures on a daily basis, with their children who get knocked down by them, but who always get up and have a desire to not let anything get in their way. Tomorrow the sun shall rise and set, yet efforts around the clock shall not. A cure for seizures is going to happen. I know it in my heart of hearts, and while I can't wear the same smile Tommy did, let's keep going for that cure and like our children never giving up until we cross the finish line.

A Brave Family, Two Angels, Seizures, and Love

2011-07-12T16:23:00.000-07:00

Seizures have caused a lot of pain for families across the globe. Regardless of your background, religion, or what country you happen to live in, they have caused soul crushing angst to so many. Some people have lost their lives far too early to this medical condition, that needs to have been cured yesterday. There have been advances, and the future does bear fruit, but it is time for these to stop right now. I want you to put yourselves in the shoes of a family for a moment, and to get comfortable in those sneakers for a few, and ask you to personally experience their story. You are now the proud parent of two twin boys, and you have nothing but dreams of your little ones, imagining them to play music, sports, and to one day find a person to marry. As you hold these precious little ones, you look into their eyes, and hope that you can teach them values, to respect their elders, and to carry themselves with character that will make you proud.

Your dreams are smashed into a thousand bits, as you receive news that your sons have Angelman Syndrome. This is caused by a deletion of chromosome 15, and causes profound intellectual disabilities, thus making you realize that those dreams are out the window. Yet the love continues. You love your children with all of your hearts, and soon learn that your "angel boys" are indeed that, with smiles, laughter, and loving personalities that touch the very essence of your soul. While they may not play baseball, they shall learn skills, play in water, and give strangers and friends alike a hug at every chance. Yet seizures start, and at fourteen months of age, you watch the boys you love having these that are so severe that its a constant struggle.

You spend an entire year at a hospital. One of your twin boys has to be placed into a coma to stop the seizures from ending his life. You are told by a doctor that "your son's have a 1% chance of living." Imagine that horror, that news, and how you would feel with this. Couldn't you feel your heart just sinking, your tears down your face, your whole being being crushed at the core. How would you feel if your children are having hundreds of seizures a day, rushing to the hospital chasing an ambulance, and spending years of time in the Intensive Care Unit? What would you experience seeing your sons have brain damage, one have a stroke, and the other one lose the ability to walk again?

A kind family in New York has experienced this. What you are reading is real. Step back for a minute, as you are sure happy to have your "old shoes back." This family is contending with seizures, that have not only made their angels suffer, but them as well. They have devoted twenty four years to their boys, in ways that they could never have foreseen. An Angelman Syndrome diagnosis is a tough enough pill to swallow, but to contend with seizures such as this, that have left your babies with a stroke, the inability to walk, or dragging a foot is a knockout punch of challenges. Yet this family and its resilience is a testament to love. Mom, Dad, and their other daughter have been through so much, yet the carry on with their heads held high.

Here's where you come in. While this family has to contend with daily struggles, you can help their angels. You can support fantastic organizations, like Vanderbilt University's Kennedy Center's Angelman Seizure research project. Why not give these young men, who still love, have laughter, smiles, and dignity a chance to not go through these seizures anymore? Every bit helps, because while it is too late to rewind the clock for this family, you can help them, and children right now who are going through seizures that have devastating effects. This bright light in New York needs your help right now. So do countless bright lights across the United States, and countries across the world. Wouldn't you like to know that you helped this family out, and so many others out, by supporting Vanderbilt Kennedy Center's project, that shows promise in making seizures a "menace from the past?"

This family should be commended for their love. They have been through so much, on a physical, mental, and emotional scale, that it is simple incredible that they are still standing. Yet they are upright and tall, and all of us are related, so pray for these two young men and their loving family. Get on board with helping Vanderbilt and others, who are trying with big cups of coffee and lots of dedication, to get rid of seizures. The time is now for this to occur, as so many are right now on the brink of mere survival, and "angels" must be shown our love, respect, and our willingness to step up just like this family to get rid of seizures forever. This family has sacrificed, and they have suffered, but yet they persevere. Let's help them, and Joel and Jay, who still have smiles on their faces, with all that they've had to contend with. Now is the time.

I Have a Dream-Seizures Will be Cured

2011-07-09T08:04:00.000-07:00

"Let us not wallow in the valley of despair, I say to you today, my friends." Those words were said by Dr. Martin Luther King in the 1960's, in his famous "I have a Dream Speech" at the Lincoln Memorial. Watching this speech, or even reading the text alone, will most certainly send chills down your back. He was a great man, and was correct when he said "not to judge a person by the color of their skin, but rather the content of their character." The United States and other countries around the world have come a long way, although there is still work to be done. The same could be said for seizures, as while researchers are working around the clock for a cure, SUDEP is a serious condition that many have experienced firsthand. It is a horrifying experience that words cannot articulate, and especially with regards to the autism spectrum, seizures are a component in many cases. That is why it is my dream, along with the dream of millions across the world who deal with seizures, to have that much needed cure. It is something that must be done, because even if it a seizure does not prematurely end the life of a young man or woman, it has damaging effects.

It is gut wrenching, to see a child go through seizures, and so many parents around the world feel powerless when these events occur. You wish you could take the place of your child, and take the punishment yourself, or that you could just wave a magic wand and they just disappear. Unfortunately, there's no magic wand....yet. There will be. Children with seizures will no longer lose all of their abilities from these seizures, especially developmental milestones that have sometimes taken years to achieve. Parents who have taught their children to walk, or grasp on to objects for long periods of time, will one day not have to worry about having to constantly repeat these skills one day.

Last night, I took a walk outside and looked at the Moon. It was said to be "impossible to reach." Humans have been there, done that, although it has been awhile. I thought about General Washington's impossible surprise at Trenton. And then I thought about the past twenty years of computers, and how far science has come. There wasn't any drinking at all, as while that's a variety of subjects, consider the Apple II C. When it was released it was "breath taking technology", now your toaster oven has more processing power. The same could be said for your cellphone, as that has more hardware capabilities that launched those astronauts to the Moon. That is why our dream of a cure for seizures, is not only plausible, but in my opinion its going to happen with the dedication of folks like Vanderbilt Kennedy Center's work on this area of medical science.

There is much despair right now. The valley is full of bumps, and a lot of pain. Yet there is hope, and that is the greatest of all qualities. We must not give up, as the dedication and love of so many researchers across the globe, of all backgrounds and religions are working dilligently to find the cure that is going to be breathtaking. President Kennedy's speech that described dreams as being done "not because they are easy, but because they are hard," could also be related for so many people's dream of a cure for seizures. Yet Dr. Martin Luther King said it best with "I have a Dream." We all do, and God willing it shall happen as soon as possible. Thank you to all whom are working on a cure, we are all praying for you, and waiting for the day when seizures no longer are an issue that affect so many, but yesterdays' news.

Linium's Kindess to Helping out the Angelman Syndrome Foundation is Greatly Appreciated

2011-07-01T08:47:00.000-07:00

Linium is a business that I do not understand, as I'll admit to being a caveman with regards to technology. Their IT solutions are no doubt impressive, because as I read what they do, I realized quickly how "over my head" they are with their business accumen. Their technolgical knowledge is so helpful for businesses, and along with that, their big hearts have touched so many. Linium is sponsoring an Angelman Syndrome Foundation fundraiser, for one of their employees Joe, along with his son Carson. Their love in "plain english" is obvious, even as their IT codes and terms leave me greatly befuddled. Thank you Linium for being involved in a good cause, and showing what a fine business does, in being part of a community that is grateful for your assistance.

The family's fundraiser is going to be in Honey Brook, Pennsylvania on July 9th of this year. It is going to involve a ride through the beautiful countryside, and help generate awareness of Angelman Syndrome, along with helping folks like Carson get extra opportunities and a better chance at a cure. This worthwhile event is going to be held at the Honey Brook Lions Club, and if you want an angel hug, there's a good chance that will be in the cards for you. The Poker Run is sure to be entertaining, but if you cannot make it, you can help in other ways. A donation to ASF HB Angels at 409 Cupola Road Honey Brook, PA 19344 would be a fine way of helping this noble cause. Let's get Carson and all angels the cure that they so richly deserve, and get other folks to know about Angelman Syndrome, and have the same passion and zeal that so many already have.

Thanks to Carson's family, along with Linium, this event can proceed with gusto. May the weather be beautiful, with plenty of sunshine, and comfortable weather. If you want to learn more of what Linium does, feel free to check out their webpage at http://www.linium.com/. I am very thankful that they have decided to help the Angelman Community, which is much larger than the one in fifteen thousand births number. When you add up all of the angels, those whom love them, along with who the angels have inspired, that is quite a crowd. God bless the kindness and decency of Linium and its employees, and go Carson go!!

WWII-What It Has to Do with Seizures

2011-06-26T11:37:00.000-07:00

Several years ago, I visited Great Britain, and got to see where then Prime Minister Winston Churchill commanded war efforts. This bunker was certainly not a comfortable place to reside, yet it is where he "called the shots", and also he was crazy enough to go to the roof to observe aerial bombardments. To say that Winston had courage is an understatement, although that word can best be described as "being somewhere between bold and absolutely nuts." During battles over London and other parts of Great Britain, the Nazi forces decimated large areas of buildings, supply lines, and even residential properties. It seemed like an insourmountable challenge, yet Winston Churchill's famous quote "Never, never, never, never, never, never give up," is appropriate with regards to the battle against seizures.

Great Britain was almost at her knees, due to the constant bombardment. My aunt's mother-in-law, all five feet tall of her with dirty feet, ran with government documents down the street, while explosions were going off in nearby actions. This resolve, and guts proved too much for the evil Nazi's to defeat. They never conquered Great Britain, rather they got their tails handed to them by the Brits, along with Americans and the allies. This country's buildings, some of them still show the damage, yet it has been rebuilt, and along with it stories of bravery in the face of destruction. That is exactly why, just like the American general's response of surrending being nothing but "nuts", is what would she feel about ever giving in or giving up, to the seizures that have affected so many of our loved ones.

We do not have bombs falling on our heads, for the most part, but we do have an explosive component of seizures, that very much threatens our family members. That is why we must never, never, never, never, never give up, even though the road is not an easy one. We do not have to pull out large cigars, and a top hat either, but continue to spread the vital importance of why Vanderbilt Kennedy Center's folks and others, must have our admiration, along with our support. They are grossly underfunded, and need all of the help they can get. Right now, they are doing amazing work regardless, much like the Britons did when their cities were on fire from multiple bombings. It is our time to cross the finish line, and with the new developments, such as the drugs being able to target the affected areas of the brains where seizures are occuring, we have hope. We also have resolve, and until there's a cure, we must never, never, never give up.

Ermey aka Gunnery Sgt Hartman from Full Metal Jacket: FAST Needs Your Help Now

2011-06-24T12:23:00.000-07:00

Most of us have seen "Full Metal Jacket," as its a classic movie, that best shows what the United States Marine Corps is all about. Yet what makes this movie what it is, is that Ermey, is a drill instructor that played the part as Gunnery Sgt. Hartman. A lot of what he says is negative, and not meant for "public consumption", but he does have some important messages about life, and also Vivint's Give Back Project, with regards to FAST.(Foundation For Angelman Syndrome Therapeutics) While I will not repeat some of his sayings, some of which cause belly fulls of laughter during his instruction to the "amphibious pieces of garbage" that he calls recruits that join his beloved Corps, I will say that he'd be right with regards to the recent efforts on the Vivint Project.

Right now, FAST is not in first place. As Gunnery Sgt. Hartman would say "This is unacceptable!!! For FAST to be in second place shows that we are not working hard enough. You will not like me because I am hard, but I am fair. The more you do not like me, the more you will learn." Well, like Ermey, I'm going to "tell it like it is now", because while I have no grudges against the other fine charities, it is simply inexcusable for us to be in second place. Second place is for losers, as first place is the only acceptable place to be, and also by a large margin. I have forgotten to vote a couple of times, and as we are all not perfect, it is time that we kick to the next level until this contest is over, because nothing short of FAST getting first place should be considered a victory.

I cannot rewind the clock, as the night of November 4th, 2009, my son Tommy, age five, died of an Angelman Syndrome related seizure. There has been a "great sadness" that was aptly described in the book "The Shack". Also, there has been guilt, self pity, and also a lack of regard for others, that led to anger so great that I wish no one will ever have to go through this angst. Even with that being said, each day even if it has pain, is a blessing, and it would be a joy to see FAST get the funding from Vivint, because I do NOT WANT any other Angelman parent to go through this type of tragedy. I am comforted that Tommy is with God, but not until a cure is found for Angelman Sydnrome and its seizures, shall I rest until my last breath upon this Earth.

The other charities represented are excellent, but FAST deserves to win this contest, for one reason alone. They have found a way to work with an all volunteer staff, to partner up with the medical community, to work on a cure for Angelman Syndrome. Their funding has led to a mouse being given Angelman Syndrome, and cured of it. You say, "so what, a mouse?" Do you realize how close a mouse is to human beings on a DNA level, and with future trials on other animals and humans, this is the natural progression of how cures are discovered. One chromosome, 15, is affected with Angelman Syndrome. In turn, one enzyme in the brain is the problem. While by no means simple, FAST must win this Vivint Contest, because our angels deserve the best, and nothing short of that.

You know how we shall win this? By voting everyday, by encouraging folks whom we know, now is not the time to be bashful or too proud. We are not asking for money, we are not knocking on doors like those door to door salesman that we want to release the hounds to. Instead, we are locked in a battle, which is as George Patton called "fear holding on one second longer." Right now, FAST is in second place on the Vivint Gives Back Project. Send private messages on Facebook, rally around with your church communities, as people love to be involved with good causes that don't require a checkbook, but rather the click of a button. By doing this, they are adding votes to a organization that so rightfully deserves it, and complacency is the mother of all buttwhippers when it comes to winning.

Ermey would expect nothing less. He would say that we need to be "Change Machines" if that movie was done, in such a way to promote FAST in the Vivint Project. Its time to put on your war faces, go out there, get family, friends, neighbors, dogs, whomever has a facebook account, to vote for FAST every day. It does not matter if you get carpal tunnel syndrome from these few keystrokes, it must get done, and right here, right now. Every battle in life that is worthy of a cause, is not easy, and this one is no exception. Yet we can do better, and in order to cross the finish line as victors by helping FAST get that cure, we must do everything in our power to "turn up the volume." It would be easy to rest on our laurels, but nothing good has ever come of that, and now is not the time. Let's go get em, and make FAST so far ahead in the lead, that one even considers catching up.

FAST (Foundation for Angelman Syndrome Therapeutics):Must win the Vivint Gives Back Contest

2011-06-24T08:01:00.000-07:00

Right now Vivint's Give Back Program, is getting heated, as it should be. This kind company has twenty finalists, charities that are all doing good works, in a online competition to see who shall get the grant money that so many of us are thankful for. While there is a lot of corporate giving in the US and elsewhere, it would have been easier for Vivint to have just cut a check, but I like what they are doing. They have allowed charities to compete for these much needed research funds, and right now the Foundation for Angelman Syndrome Therapeutics(FAST) is in the lead by just some thirty votes. While there's still a lot of time left, this does not sit well with us, who know that FAST offers a real chance for a cure of Angelman Syndrome, and has a ALL VOLUNTEER STAFF. Talk about commitment, and all of the research money going right to the cure, which has been done with a mouse by FAST's efforts.

Other charities in this voting contest our not evil, and there are a few that sometimes eclipse FAST in votes. They should be admired, as they are all helping people with conditions that need a cure, but its FAST time. Its our once in a lifetime opportunity to get a cure for Angels, and by the grace of God, with our blood, sweat, and tears, we must provide FAST this win. I admit to quoting Edmund Burke, along with General Patton too much, because they are folks that I greatly admire. They were bullheaded, never gave up, and Burke's quote of "All for evil to triumph, is for good men to sit back and do nothing," is a famous one. Take that out of context a bit, remove the evil, replace it with another charity(that's doing good but we don't want to win), and remember to vote for FAST every single day on Facebook.

In order to do this, "like" Vivint, and then add your endorsement to FAST. Its that easy, everyday you can do it. You can get friends, family, even the guy who sings to himself while walking an imaginary dog in your neighborhood everyday. The point of that is, vote everyday, and do not be ashamed to ask folks to help. You are not asking for money out of their pockets, you are not bugging them like those charities in the famous Airplane movie scene where Robert Stack just knocks them on their rear ends, you are telling folks how to become involved with just a click of a computer button. They can do this from home, work, or while drinking fancy named coffees in a wifi establishment, while hanging out with fellow beatniks. It doesn't matter, do what you can, and do not be afraid to ask folks for help. You'll be surprised, when people hear about FAST and how easy this is, they are going to thank you, and also do it. Yet they must every single day.

The way for this effort to succeed, is we must have the heart of champions. That's right, its "Rocky time," and don't make me call "Mick" his grumpy old trainer, to tell it like it is. Its now or never. This is the best opportunity for FAST to get the much needed funding it can, to deliver the cure that thousands across the United States and the rest of the world have been waiting upon. So that is why, it doesn't matter, if you live in Austria, France, Iran, New Zealand, Qatar, Russia, or Zimbabwe, you can vote for FAST on Vivint's Gives Back. Give angelman syndrome parents and families the security that Vivint provides, by voting everyday. This is our time if you click that vote button everyday, because its time to cross the finish line and find that cure.

School Children at Little Run in Fairfax, VA Give All to Those with Special Needs

2011-06-23T11:15:00.000-07:00

The past week has been a bit rough, as while everyday I miss my son Tommy who passed away from an Angelman Syndrome related seizure in 2009, there are rays of sunshine that far outweigh the pain. Yesterday was one of these moments, as I visited the school that became more than just our educators, but rather members of our family. Tommy was so blessed to go to Little Run Elementary, which is located in between Annandale and the City of Fairfax. Their administrators, staff, teachers, assistants, and therapists helped Tommy, and in turn greatly assisted us as well, when he was alive and afterwards. They are always in my mind and heart, so I visited them yesterday, where they have a beautiful memorial in front of the school to Tommy. I remember crying at this service, and how the rain poured down that day, which was prophetic as his love of water was second to none.

Yesterday, I smiled looking at his memorial, and the bush with red flowers that are about to bloom next to it. After going inside and meeting with the Principal, whom I deeply respect, I learned something that made the sadness go away even further. When Tommy was at Little Run, they had "Peer Helpers." These are mainstream students, who volunteer to work with preschoolers whom have special needs. Its a great project, as it is mutually beneficial, and many of the students volunteer every year. As I've mentioned before, in high school we had special needs children in the building, and I was very uncomfortable. I never harbored ill feelings or any kind of resentment, but seeing a person with special needs would make me "clam up" a bit, as I just didn't know how to react.

I found out from the Principal, that the students are volunteering as "Peer Helpers" so much, that they are simply overwhelmed by the sheer number. What a joy this is, and some of the students want to give up their free time at lunch or recess to work with a fellow youngster, with special needs. This is proof of pure, innocent love, and to say that I was touched is an understatement. We have come a long way from my days in the stone age, and to hear of children wanting to sacrifice their free time to work with a child that needs an extra hand, well that caused me to cry tears of happiness and of thanks. Little Run has always been at the forefront of programs for children with special needs, and they really are a "community school." The children graduating to middle school and further, are never going to forget this experience, and are going to be advocates for those who have intellectual disabilities.

Thank you Little Run Elementary. Once again, you've somehow managed to enter our family's life again, and in such a beautiful way. If any students from Little Run, or their parents read this, I hope they realize that they've helped a grieving father, along with students who have challenges, but whom never give up. Just like Tommy, the children who are going the extra mile to work with children with disabilities, they are true champions, and they've helped more people than they will ever know. It has been proven that mainstream students who work with children with intellectual disabilities, grow up to have good character, along with doing better academically than those who do not. That has been proven in numerous studies, along with family members by sociologists. God bless you all who were a part of Tommy's life at Little Run, and who continue to keep his legacy alive, along with making such positive inroads into so many families. You have made me smile, and I think that even though this world is sometimes a "messed up fishbowl," there's a place of refuge where compassion, understanding, and good hearts reign supreme. That is Little Run Elementary, and they should be proud of their great work, and all of their accomplishments.

Splash Art International: A Global Effort of Love for all Angels

2011-06-22T09:35:00.000-07:00

Angelman Children are known for their laughter and smiles, but they are now getting recognition for their fine art work. Angels along with their loved ones have taken part, in a awe inspiring effort that spans the globe, at http://splashart.webs.com/. This moving site on the internet is proof of a loving God, compassion of parents across this planet that is growing smaller everyday, and by the love of Angels. I cannot tell you the difference between a Monet and a Rembrandt work, but I can see with my own eyes, the beauty of the paintings and photographs that are here. This effort was created by Darren Humphries and Luisa Fernanda Otero, and their dedication and purity of cause is undeniable. Luisa's son Nico, and Darren's son Elijah, have created on canvas what can only be described as innocence, joy, and kindness for all.

Darren and Louisa should be commended for this effort, as it shows another side of Angelman Syndrome, along with the importance of arts with regards to children and people whom have this condition. I will admit to a tear, because when my son Tommy was alive, he painted at school and just loved it. Like Elijah, he went to God far too early, but their legacy lives on, whether its on canvas, through people that they touched, or by the fact that "angels" and other folks with special needs are now getting opportunities with arts and recreational activities. Educators across the globe need to look at their work, and see for themselves, that incorporating arts into a child with Angelman Syndrome's curriculum, is of vital importance. It allows angels to communicate in a different way, to express what's in the very essence of their soul, and teach us all valuable lessons.

The past few days have been an emotional rollercoaster, but http://splashart.webs.com/ makes me smile. It is such a joy to look at the pictures of Elijah and Nico, to see what they've managed to create with some paint from their loving hearts. The best description I can give this effort is joy, as that's what it has made an otherwise dreary few days turn around. Thank you to Darren and Louisa, to Elijah, to Nico, and to all of the folks who've taken photographs or drawn pictures of angels. I hope that one day there will be an exhibit of these artworks, because they will tug at your heartstrings, and make you realize that there's something bigger and better than all of us out there. My spirituality has been strengthened by loooking at these paintings, and are a reminder that life is what we make of it, as it is a canvas that is always changing. With this effort, its on a good road.

Vote For FAST(Foundation for Angleman Syndrome Therapeutics) in the Vivint Gives Back Project

2011-06-20T08:14:00.000-07:00

This morning I'm sweating. A lot of other parents are as well, as while we love the kindness of Vivint's "Gives Back" program, the charity FAST is now in second place. While I'm sure the other charity is a fine endeavor, FAST aka Foundation for Angelman Syndrome Therapeutics is top notch. This group does NOT have paid staff, rather they are a group of parents whom have children that have Angelman Syndrome, and are doing everything in their power with benevolent doctors to find a cure. Through their work, they've already found a way to genetically modify a mouse to have Angelman Syndrome, and deliver a cure. Next up, will be other animals and eventually humans. Wouldn't you like to be on the right side of history, to see what's so close, just on the cusp of the horizon, finally being resolved?

You can do this! Every day, vote for FAST on Vivint's "Gives Back" page, that is located on Facebook. This requires a few keystrokes, I'm not imploring you to sell your prized train set or comic books, but to simply log in everyday and vote. FAST was in first place, but its now dipped to #2. That's fine and dandy for generating awareness of what this kind organization does, but winners cross the finish line first, and by the grace of God and by our voting, may that happen. Yet it won't if we kick back and do nothing. Remember that Edmund Burke line, "All for evil to triumph is for good men to sit back and do nothing? " While the other charity is not evil, nor is the contest, its time to vote and get the word out that FAST is the best charity, due to its groundbreaking efforts and being so darn close to getting a cure.

I cannot rewind the clock, as I miss my son Tommy every single day. Other Angelman parents are in the same boat, as we've lost our "angels" through seizures or causes related to this condition. There's no anger, but rather resolution to see FAST cross that checkered flag victorious, with the grant money going to them to find the cure. No parent should have to go through what a number of us have, and children and adult with Angelman Syndrome deserve a cure. Its 2011, and medical advances much like technology, are moving at the speed of light. That is why I ask you humbly, please cast your vote for FAST in the Vivint gives back contest. Thank you for reading this, as I appreciate your work FAST, and am appreciative to the warm folks at Vivint for giving us an opportunity. Now let's make that happen!

Thank you Vivint-A Company That's on the Cutting Edge of Technology Gives Back to Those in Need

2011-06-19T18:20:00.000-07:00

Being a homeowner is unpredictable, and it makes sense to have an alarm protection system, as well as warnings about potential weather hazards. Vivint is an industry leader in this field, as they have incorporated innovations that go far and beyond anyone else in this area, and they provide solutions that are user friendly and on the edge of technology. Life is unpredictable. If you are the parent of a child with Angelman Syndrome, Rett Syndrome, or other conditions, you know of the constant stress, and pressures that you must encounter on a daily basis. Just like how Vivint brings security to our lives, they have also decided to give back to charities, that greatly help those in the special needs community. Vivint is a company with a big heart, and they deserve kudos for generating awareness of numerous, effective charities, along with supporting two that are in the prayers of many.

These would be FAST(Foundation for Angelman Syndrome Therapeutics), and the International Rett Syndrome Foundation. Both are excellent charities, that have helped many, and are at the forefront just like Vivint, with regards to finding a cure for these conditions. Angelman Syndrome and Rett Syndrome share a lot in common, as while there are difficulties, there's a lot of love from the parents of those who have been diagnosed with them. Everyday on facebook they are voting for the Vivint gives Back feature, and it has been fun to participate, and also to watch the results piling in to see who will get much needed funds for research and other endeavors. While I'm hoping that the charity called how I drive wins, whomever does is the end is going to help a lot of folks in need.

Thank you to the kind folks at Vivint. You are more than a technology company that makes the lives of families safer, but also helps families who are fighting everyday for mere survival. These families across the US and world are so underserved, and your company has given us a chance at equal footing, to make positive changes that are so needed. A lot of times businesses are portrayed for their negative actions, and its so good to be able to write about Vivint leading by example, and showing the importance of how we are "all in this fishbowl together." Please be sure to support Vivint by looking at their internet site, purchasing their products, and thanking them. Also, don't forget to vote. Each day you get a chance to vote, which is a lot more often than political races, and with tangible results that will bring progress to our causes.

An Ode to Father's: Those Who Have Special Needs Children and Those Who've Lost One

2011-06-19T04:53:00.000-07:00

Today is father's day, and this is usually an occasion marked with perhaps a card, cigar, or a ridiculous looking tie that will never be worn. Being a Dad is the world's greatest job, but its not always the easiest, especially to father's that have a special needs child, or have suffered the loss of one of their kiddos. For those with children who have it a bit more difficult than others, my heart goes out to you. Too often we as father's focus on "what's wrong with our children," along with being angry and frustrated that we can't help our children, or explain to others easily that our boys or girls aren't going to make the baseball team. I've been there, and its difficult on the male ego, which means obviously a whole host of other challenges that go with it. Yet I hope that with a step back, you can avoid some of the mistakes I made, and realize that there's so much more that a special needs child is capable of, and that you have to be "a rock" for your family. Its not easy, life isn't, but it is necessary.

All of the dreams for your son or daughter are crushed, when you receive "the news," and not the good one either. Your hopes for teaching them to fish, hunt, play a game of football, or just get into cars are thrown out the window. Until my last day of life, I will regret not focusing on what Tommy could do, and letting this period of difficulty extend far too long. When he was born, I remember thinking " I can't wait to teach him how to go fishing." Then, when I heard of his Angelman Syndrome diagnosis, I flipped out and left the doctors office in an absolute rage. A homeless man begging for money, got to be on the receiving end, as I yelled at him "How dare you bother me now? Why don't you do something such as be a real man, and get a job!!"

I feel bad for that man, who picked the wrong day to ask me for money. While I don't think panhandling is acceptable, my response was not, and if I ever see him again I will apologize and purchase him a meal. Losing a child causes similar pain for us fathers, who don't wish to admit crying, and try to soldier on stone faced in grim circumstances. We try to put on our "game face," but behind the eyes that seem not to betray us, there is a pain, and rage fueled with suffering. It is so "against the grain" for us to bury our children, rather its supposed to be the "other way." Yet that's not always how it works, and there's so much in our lives that is out of our control, whether we want to admit it or not. Stoicism is a fine value, but sometimes you have to admit to the pain, that can drown you in self destructive behavior. I know this firsthand, because after my son's passing, I drove around town at high rates of speed, not caring for the welfare of others or myself. It was selfish and irresponsible behavior, and showed a lack of empathy for my fellow human beings.

Humanity. Do you think you are alone with a special needs child, or if you've been a father's who lost one? Nope, not at all. There are many of us out here. This is not a traditional father's day message, but remember that you and I both are not perfect. We can only do the best that we can, and if I had to do it over again, of which I have no choice, I would have focused more on the joys of a child with special needs rather than constantly worrying about the ramifications, the medical trips, the strain of stressing out about seizures and other pressures. Today is an important day as fathers, because we do fulfill a vital role in society, as well as being members of families and there for children who may give us that "title." Its a job alright, but there's no better one, even though the pay isn't so great :).

If Tommy Can Walk, Then A Cure For Seizures Can Be Found

2011-06-18T10:27:00.000-07:00

It is hard to believe that in July, my son Tommy would be seven years old, if seizures had not taken him to God far too early. I would by lying if I said that the past few days have been a joy, no they have rather been full of despair, as this test of faith and resolve has been a battle. My co-workers and folks I know of, do not understand my silent pain, which manifests itself in a variety of ways. There's been a couple of short tempered outbursts, along with more aloofness, and I am not ashamed to admit going somewhere to simply cry. I've had dreams about my son, and seeing a little boy with blonde hair can sometimes trigger immense pain, of which there are no words to describe it other than "soul shattering." Yet the sun is starting to rise again, because of one particular thought, along with running into a Cancer survivor who told me about her fight to survive. God puts people in our lives at the right time, and a memory of Tommy has caused a grin instead of tears.

Earlier today I drove by where he went to school, and I thought about him learning to walk in our neighborhood swimming pool. Some doctors told us, "he may not walk." Granted doctors have years of education, high IQ's, and do not wear a name tags and boots to work everyday. Yet they are people, and just like all of us, imperfect. Tommy's pediatrician was wonderful, and the majority of the medical staff that took care of him, or looked into how he was doing, were kind folks who understood compassion and that Tommy's life had as much value as anyone else's. He was Tommy, not an Angelman Syndrome child named Tommy. During one visit he even had our rather uptight neurologist laughing, because he couldn't stop laughing, and I giggle thinking about him with my parent's dog, with whom he just truly loved. They had such an incredible bond, and my parents were instrumental in getting him to walk.

The summer of 2009 was an incredible time, as Tommy was progressing quicker than ever before. From a chunky boy named "Porky", he thinned out a bit, as his mobility improved. He no longer looked like a sumo wrestler, but rather a well built, athletic machine, and my folks surprised my wife and I one night. They told us "Come to the pool." Lo and behold, Tommy was walking across the entire lanes, and the tears of joy and celebration were also full of smiles as well. He walked across the pool, in water of numerous depths, and if he fell, he'd just laugh and start walking again. Tommy at five proved a point, that he walked in the water, and in the fall he was able to walk across our living room.

A lot of thanks go to my parents, and to all of the educators at his schools, that constantly worked with Tommy. These include teachers, speech therapists, occupational therapists, and physical therapists who frankly "wore him out," but in a good way. This led to his slimming down, and while tall, he stood even higher as he made the trek across the living room. There was not a soul holding his hands as he did this, and his smile and laughter, along with the look on his face, said it all. He knew exactly what he was doing, and that his accomplishment was worthy of more than most of us face ever. I will never forget this bravery, because while he did fall down, he always stood up. A week later he left us, and my mother-in-law who was instrumental in his success, had a dream. Her parents came to her, whom passed away years ago, and said "someone is going to be taken from the neighborhood." It didn't make sense at the time, but perhaps this was a sign of things to come. His passing was and is so painful, but each day is a new one, full of infinite possibilities, and of something else.

If a young boy who "may not be able to walk," then why can seizures not be cured? The parallel to this is obvious. A cure will be discovered, and while I wish along with other parents who've lost a child to seizures that it was yesterday, who's to say it won't be today or tomorrow? Until there is a cure, we like Tommy, cannot give up. Only when the cure for seizures is discovered, can we truly take our "feet off of the throttle." Its okay to take steps back, as long as they are like chess pieces, in that we are moving them in a way that they will ultimately get a "checkmate," or in our case a cure to the seizures that have taken too many children away from their families. When I visit his gravesite, I'm often struck by the notion of how many parents have gone through this same journey, and that we are not alone in our pain. Yet we have a duty, albeit a solemn one, and that is to continue our children's legacy in such a way, that it can perhaps give the next generation a better chance. Tommy walked, and he stood tall. For a boy who "may not be able to walk," he did much more than that, and it is our duty as parents and people who love those affected by seizures, to do the same.

A Big Heart in Oklahoma-A Science Project on Epilepsy and Much More

2011-06-13T12:16:00.000-07:00

When I was a young man, the only thing I thought of epilepsy, was that I should be afraid of it. Considering that goes back awhile, and archaeologists are still digging up fossils from that period, as a society, "we've come a long way baby." Epilepsy is frightening, but it is not something to be afraid of, as it affects over three million Americans alone. For boys and girls with disabilities, the rate is much higher. Although recess and lunch were my only two successful subjects, there's a young lady in Oklahoma who's both brilliant and even more importantly, has a BIG heart. Victoria is her name, and what she has meant to those of us fighting seizures, looking for a cure, and being there for her parents is truly spectacular. This brave young lady lives with a younger sister Nancy, who has Angelman Syndrome, which of course seizures are a component, and a brother named Sebastian.

Victoria lives a busy, productive life, and her mother is very proud of her. Recently, she did a science project on Epilepsy, that won a ribbon for its distinction, but even more importantly is educating a future generation in ways we failed. Instead of just sticking to the status quo, she made her science project(pictured above), both visually appealing as well as informative. There's so much information packed in here, and she used her first hand experience to allow others to gain knowledge on the subject, which is necessary due to the high number of folks affected by epilepsy. Victoria's project covered aspects such as what epilepsy is, pics of EEG's for those of a person without this condition and another with it, types of epilepsy, what to do in case of seizure, different types of seizures, parts of the brain that are affected by them, and the medicines being used to prevent or lessen their effects. It is an impressive look at epilepsy and seizures, and Victoria should be commended for a job well done, along with giving others a look at this condition that needs a cure now.

She has made her parents and school proud, but she also has made an entire community fighting seizures pleased as well. Its up to Victoria and young people of her generation, to take up the battle, and generate awareness along with finding a cure for seizures. She has been a "rock" for her mother during tough times, and you just cannot find this type of good character, without a big heart. Victoria, thank you for what you have done, because you are bringing the fight of your sister and so many to folks, whom had no idea of what epilepsy is or the effects that it can cause to a person or family. You are so kind, and have helped educate others on an important subject, that is now finally getting the attention it so richly deserves. As far as I'm concerned, along with a whole bunch of families, you get an A+ for your work, an A+ for your support to your family, and an A+ for your character, values, and big heart.

105.9 the Edge, Mix 107.3, WMAL AM 630: Angelman Syndrome on the Radio with The Spectrum

2011-06-09T05:38:00.000-07:00

105.9 the Edge is my favorite radio station in the Washington D.C. area, and its hard hitting format, has finally allowed me to give up cranking CD's or snoozing to books on them behind the wheel. Along with the Edge, I listen to Mix 107.3 for its contemporary music selection, and WMAL for its political commentary. These stations are owned by Citadel Broadcasting Corporation, and it is my distinctive pleasure to thank them, along with Spectrum Radio Host Tom Grooms. He is a "man of his word," and kept a promise to do a show on Angelman Syndrome. It would have been easy for him to forget, with his busy schedule and numerous responsibilities, but he never did. As soon as I emailed him, Tom grabbed the "bull by the horns," to have a show on Angelman Syndrome, the epilepsy that is associated with it, and also about bereavement for a parent who's lost a child. Words are a poor excuse for how I feel about his kindness, but here is the link to his show: http://www.theedge1059.com/Article.asp?id=653049.

I was nervous doing my first radio show, yet Tom Grooms's professionalism and decency, allowed me to chill out completely. He is a genuine good soul, who cares about the special needs community, and has done a lot of shows that focus on autism. We need more folks like Tom, who understand that these issues need to be brought to the forefront, instead of a lot of the "other stuff" that seems to be overplayed on the radio and television airwaves. Without a doubt, his big heart and gung ho attitude, are a valuable resource for those of us who love somebody with special needs, or want to become involved in the fight to get better services or cure for various conditions. A classy man, and a big thank you to Tom for blazing this trail with such dedication.

The show on Angelman Syndrome is going to air this Sunday, on all three stations listed. If you go to http://www.theedge1059.com/Article.asp?id=653049, that is where the information is. You will have to get a cup of coffee for this early morning show, so add a shot of expresso to your mug. Also if you love some with Angelman Syndrome, or have a family member with epilepsy, let's all "like" the stations on Facebook. If you are in the Washington D.C. metropolitan areas and surrounding 'burbs', crank up the Edge. Their format is awesome, and they are the home of the classic and hard rock that you know you love. If you want a bit more laid back music, Mix 107.3 is a good choice, and WMAL 630 is home to excellent politics and news shows. Thanks to Citadel Broadcasting, and hats off to Tom Grooms for being a man of honor, decency, who's willing to help the folks in the Angelman Syndrome Community continue the march forward to a cure.

Seizures: The Numbers of Folks Affected by Epilepsy is Shocking

2011-06-06T07:57:00.000-07:00

As a society, we have come a long ways, in epilepsy awareness. Many years ago, in the Paleolithic Age when I was a teenager, I knew that seizures were a potentially dangerous health condition, caused by abnormal signals to the brain. Also, I was aware that a person who is having a seizure should be given space, to make sure the enivornment was safe, and to check for objects that they could choke on. I have seen seizures with my own eyes, and they are frightening. One of my buddies has had them, and I consider him to be a brother. Another person in my life who's had seizures, that I love dearly, is my son Tommy. Seizures ultimately caused his life to end far too short at age five, yet his legacy lives on, as does his ability to stand up strong.

There are over three million folks in the United States alone, that suffer from epilepsy related conditions. Most believe the number is higher due to undiagnosed cases, or the sometimes stigma that goes along with it. The stark number on the autism spectrum is startling, as a lot of children and people on it, are affected by seizures. Even if you only count the United States, with roughly one in one hundred people, think about the size of that group if it was an army. Now, let's go around the world and add some other numbers. Do you think three million is a lot? Add China, India, and other countries with large populations. Then for good measure, throw in some folks from the Cayman Islands and Gibraltar. You are going to have probably close to 100 million people across the globe, that are affected by epilepsy. Now that's a heckuva an army, let General Patton have that, and kick some serious tail with a group of soldiers in that number. The "People of Walmart" wouldn't stand a chance.

Epilepsy affects us all. Perhaps its a family member, a friend, a neighbor. It can have devastating effects, such as what happened to our Tommy, which is by no means an isolated incident. Look up the term "SUDEP", and see for yourself. Even if it does not take the life of your loved one, friend, or neighbor, consider the damage seizures do to them. Their cognitive and mobility will be affected, their body will be physically drained from the seizures, and they are going to require a lot of rest. Many hospitalizations and ICU visits every year, could be avoided if seizures were cured. For those of you who are thinking cost vs. benefit, that should indicate enough of a reason to hop on board with the folks at Vanderbilt University's Kenndy Center and other research institutions, to defeat this menace.

Foundation for Angelman Syndrome Therapeutics: FAST-Colin Farrell's in the House

2011-06-05T08:33:00.000-07:00

There are so many people in the Angelman Syndrome family, that are hoping for a cure, to this condition that is caused by a deletion of chromosome 15. While angels are a joy to live with, due to their magnetic, happy personalities, infectious smiles, and laughter, it would benefit them and their loved ones when that medical breakthrough is discoverd. Notice the "when" and not the "if," because that is for a reason, as the work of Dr. Edwin Weeber and others, with animal projects have proven that Angelman Sydnrome can be created and cured at the genetic level. Ten years ago, "if" would have been appropriate, as some of the most intensive research has taken place in the past couple, due to the dedication of doctors and groups like FAST. For those of you whom are not familiar with FAST, it stands for Foundation for Angelman Syndrome Therapeutics. Based out of Illinois, and run by an all volunteer staff that are all parents to a boy or girl with Angelman Syndrome, they've got the passion and the decency to never give up.

It is too late for my son Tommy, who sadly passed away from a seizure related to Angelman Syndrome in 2009. This is the same story for other parents of Angels, who miss their little ones, more than mere words on a blog could express. Yet there are thousands of parents and family members across this globe, which is becoming smaller everyday, that hold out the hope for a cure for Angelman Syndrome, which causes major developmental delays, such as those related to mobility and speech. FAST offers a chance for these parents, as the organization is broken down into a Board of Directors and Scientific Advisory Board. This unique partnership, along with its volunteers, makes it an "effective machine," for new possibilities, including the cure that's around the corner if the necessary funding can be discovered. When you think about the cost versus what it would mean to parents and children everywhere, it is a "drop in the hat," and I cannot stress enough the importance of donating to FAST whatever you can.

Funding goes to help discover new treatments for the cure of Angelman Syndrome, along with helping angels get better medical care. That is the proverbial "win win", and the passion that FAST has cannot be denied. Parents of angels are running races, generating community events, all to help out this efficient organization. Even Colin Farrell, whose son has Angelman Syndrome, has chosen to work with FAST because of this level of dedication. For more information, go to their internet address at http://www.cureangelman.org/. There you will see a group that is committed to a cure, and you can reach them at 1-866-783-0078. Look at their site, and I am sure that you will be impressed by their endeavor, because a cure for Angelman Syndrome is a reality.

With a Bright Yellow School Bus, Tommy's Spirit Lives On

2011-05-30T16:23:00.000-07:00

As a high school student, I was the type of guy, that administrators and teachers would mark present, even if I wasn't there. While I did enjoy school, mostly to check out the girls who were in my classes, my best subjects were recess and lunch. There were great teachers, including a history teacher, who was also one of the football coaches. I never had a problem paying attention to him, after falling asleep one day. This grossly overdeveloped man, kicked my desk from underneath my gross underdeveloped body, and was known to also throw erasers and chalk at students who snoozed. He was actually a fantastic teacher, and it was due to him that I discovered a love of History, and sort of turned out okay. While a lot of days I would be out at a local park playing volleyball, or eating off campus which was a big "no-no", Tommy loved school more than any person I have ever seen.

Each day started off with the bright yellow school bus, that would show up at our door around 8:30 a.m. My mother-in-law, used to sing to him as it arrived, and my boy would smile a grin that was a country mile wide. These are the memories that I like to cling to, as they remind me of a simple joy, that Tommy loved from Monday to Friday. His first driver was a former nurse, and all of his drivers were fantastic. They loved him, although I do not think they could love him, as much as he did them. You could just see it in his eyes, as he would light up when the bus turned the corner on our street each morning. The driver and aide would greet Tommy, and his arms would flap up and down, with his trademark smile and laughter. As the loading ramp would come down, Tommy would get even more excited, and we'd stand there and watch him on the bus bouncing around.

It seems like a lot longer, than a year and a half ago, that he went to God. The night of November 4th 2009 shall never be forgotten, but it is with a smile, that I remember Tommy's joy seeing that bus every morning. One of the best memories is his bus driver singing "Happy Birthday" to him over the public address system. Tommy smiled and laughed, and as he loved music, he loved the crooning bus driver's singing. The "Wheels on the bus go round and round" is a song loved by kids, and even by adults that haven't "grown up" yet. Everytime I hear this song, or sing it to Tommy's younger brother, I think about our boy. I know he's with God, who's love is endless, and while I have yet to see a Biblical passage that describes buses, I am sure that all is possible in Heaven.

Quite regularly, I run into Tommy's bus drivers and aides. They meant a lot to me when Tommy was alive, and they still do. I consider them to be family members, and sometimes I see one of Tommy's buses still going on down the road. Sometimes I look at it, with both sadness and happiness, as strange as that sounds, and look at where Tommy used to sit. It was always on the driver's side, and close to the back. Often I picture what he would look like right now, as what would be his seventh birthday is coming up in July. Instead of pain, I have to smile looking at those buses. I've seen them parked and touched them, even rubbed my hands by the window that Tommy used to sit in. It brings back good memories, and everytime I see a yellow school bus, I have to think about him smiling in Heaven, with God at the steering wheel.

Suck Feizures Buttons: Show Off Your Support and Help Destroy Seizures

2011-05-28T15:47:00.000-07:00

Millions of people worldwide are affected by epilepsy, and its high time that a cure for this condition is discovered. There have been exciting developments, such as what the folks at Vanderbilt University's Kennedy Center have been working on, but its time that parents and children alike can rejoice with celebration. Too many have lost their lives to epilepsy, and those who must contend with it on a daily basis are counting on us. That's right, while they fight we must join them on this endeavor, and bring them the relief that they deserve. It is a matter of a moral cause, and instead of shirking from seizures, its better to battle against them standing up.

"Suck Feizures," is an obvious play on words, yet it is what the parents of children with epilepsy feel about seizures. We are sick of watching our children suffer, have their developmental milestones hampered, and their lives to end far too quickly. I along with many know this firsthand, as I have buried my own son, who went to God at age five. I have no anger towards God, who's love is endless, but I do have a serious problem with seizures, and will stop at nothing to watch their demise become a reality. That's how the facebook group "Suck Feizures" was started, and how shirts, stickers, and now buttons have been created to help Vanderbilt's folks get closer to the finish line for a cure.

Go to http://happyangels.ecrater.com/, and see the cool buttons you can purchase. Each one bought helps with research at Vanderbilt Kennedy Center, and is a fine reminder of the aggression that's being waged against seizures. Suck Feizures is a strong statement, which is an embodiment of those folks who are fighting seizures, and those who love family members have that a condition that causes them. A purchase from this wonderful site on the Internet, started by a loving soul named Carmelita, will go a long way to both generate awareness and assist researchers. This is an effort from the heart, and I would like to personally thank Carmelita, and all of those who have been standing firm instead of sitting back. "All it takes is good folks to nothing, for seizures to succeed." That slightly altered version of what Edmund Burke said over two hundred years ago, is the truth in this matter. Now its time for you to decide, do you want to help a good cause by fighting with love, or just hope for something to happen? The first one is the only option, and I hope you will check out http://happyangels.ecrater.com/ to be a part, of the fight that is being done with compassion, kindness, love, mixed in with determination for good measure.