Angelman Syndrome Parents Describe How Seizures Make Them Feel-Let's Find That Cure!

It is too late for my son. It is too late for other children, who have died from seizures related to their Angelman Syndrome diagnosis. The closing of that coffin just echoes throughout your soul, and forever it is constantly slammed into almost every facet of your life. Losing a child is a parent's worst nightmare, and I DO NOT want another person to have to go through this. While a simple man, who wears boots and a uniform, I will not give up until a cure is found for these seizures. To have another parent find their child unresponsive, their house surrounded by blue and red lights, and to hold their dead child's hands as CPR is stopped, well I will do everything in my power to make sure that it won't happen to another family.

That is why Vanderbilt University's Kennedy Center Angelman Syndrome Project is so important. They do not wear boots or nametags, but rather are educated in fields such as neurology and rare conditions. The researchers here are our best hope, and it is up to us, to give them the funds necessary to discover a cure. There are multiple teams there working on this everyday, and so far they've seen some successes. This is wonderful, but until a cure is found, none of us shall rest, unless we like to play "Russian Roulette" with those whom we love. Those would be "angels" of course, or people with Angelman Syndrome. The deletion of chromosome 15 does not affect their ability to love, nor does it stop a parent from wanting to constantly be hugged by them. If you want to know what an angel parent feels about seizures, here are some descriptions from a few, who wanted you to know what its like. Let these words sink into your conscience, and decide for yourself if the Vanderbilt project is a worthy goal. Its up to you, as the ball is in your court.

"Powerless, helpless, inadequate, at mercy of seizures, want answers not suggestions, the look in my son's eyes cause me pain, cognitive ability set back, hold us and our children hostage, cost, health, family time, money, employment. We don't know when the next will hit and how hard. Walking in a mine field, every step a potential explosion. Feel like a bad mother due to no answers, daughter screams, makes me cry, wonder about hospital trips, broken spirit, left alone, furious, sad, frustrated. When my child is convulsing in my arms I'm so scared to death as well. Will this be the time I have to bury my first born? Unfair, Failed parent, watching child's body recover is so painful, docs constantly playing with medications, world comes to a stop, cheated, watching child turn blue, feel spiraling out of control, pain, the life is sucked out of me."

Now, with those feelings of Angelman parents, do you think you could spare a few dollars to this good cause? These are powerful emotions, that should haunt us all. Yet the majority of people, thank God, don't have to go through such trials and tribulations. Want to help these wonderful mothers and fathers out, who truly love their children, and who want the best for them? Even with all of the challenges, their hearts pour out a volume of love, that is hard for the average person to comprehend. You can help them. They are your neighbors, and in order to find a cure, the best chance of this is to go to http://kc.vanderbilt.edu/site/giving/default.aspx and donate with the words "Angelman Seizure." The research team there is close, yet we need to cross the finish line. It would be great to see these loving parents use words such as "hopeful, thrilled, overjoyed, and happy" instead of these.

Absolute Victory, Angels on Earth, and the Suck Feizures Collection

The day that my five year old son lay dead in my arms, due to a seizure, will like FDR said "live in infamy." That pain that cut like a knife, that sucked the wind out of my soul, and the anger and depression that followed will never be forgotten. Last night I was looking at Tommy's shoe's, the Spiderman ones, that had the bright blinking light on them. Right now he'd be getting close to seven years of age, running around, and probably able to accomplish a good bit if the seizures could be kept under control. Yet, that would be a big if, if he was still alive. Too many children and people with Angelman Syndrome have seizures, that affect the quality of their lives, and also on occasion take them away from their loving families. There's nothing worse than having your child die, as not a day goes by without you thinking about them, and also wondering so many "what ifs" instead of having tangible answers.

Want to help out in the battle against seizures? I must quote FDR again, in stating that nothing short of "absolute victory" against seizures, will be acceptable. There are multiple ways of helping out with this menace. You can get business and religious organizations together, or make an individual donation to Vanderbilt University's Kennedy Center Angelman Project, which is working on solving these seizures with a high level of intensity. Yet how would you like to generate awareness, and at the same time, by purchasing a shirt from Angels on Earth from the Tommy Collection, help out as well. Each shirt from http://www.angelsonearth.net/Tommy-Collection.html helps Vanderbilt's project, while also providing you with a fashionable statement, that's sure to garner attention.

"Suck Feizures," the obvious play on words, is a strong statement. Yet when you lose your son, or you are a parent of an Angel who's developmental milestones and health are affected by them, well you want to strike these seizures down forever. I'm not the only parent who's had this experience, and each shirt your purchase from AOE's Tommy Collection helps this nightmare become less of a reality for many who are depending on you right now. I've ordered mine, and am thrilled with how it looks, with the cool customized design on the front, and the strong wording on the back. Its a stylish shirt, and I plan on ordering more, due to being impressed with the quality. These shirts are made with love, by a mother of an angel, who has a heart of gold. Please order a shirt or two, and help generate awareness, along with bringing much needed revenue to Vanderbilt's seizure research.

For the rest of my life on this Earth, I will not see my Tommy again. While I hope to live a long life, when the time comes, I pray that God will reunite us. We have so much to discuss, and I just want to give him a hug, and never, ever let go. You do not know how much you love someone until they are gone. That's why this battle goes on, because until absolute victory is a reality, there's a chance that another parent could lose their son or daughter far too early. There's definately going to be suffering caused by seizures, and that has got to stop. Please consider the AOE Tommy Collection, because each shirt purchased, is a strong reminder that we have a long way to go until the war is over.

Life is a Circus, and It is not Fair

Life can be so stressful at times. It could be a difficult boss at your job, a person who gets on your nerves, or the fact that the bills just never seem to stop piling up. We all have a lot on our "plates", and while they aren't empty, they can be fulfilled in a much more pleasant way with faith. The past year I've met incredible people, that have inspired me, and made me realize that I'm not alone. Even after holding my own son, who passed away in my arms, I realize that others have experienced this same pain. It doesn't make me special, and I don't want people to feel sorry for me. Do I hurt? Of course. Every single day, and as I've previously noted, I particularly like how Tony Dungy described the loss of his son as "I'm still grieving." It will never end, but the love of God is endless.

There are no guarantees in life. While all of us have thought "Wow, I wish I had a life like that person," do you really think they've had it easy? Do you think you are seeing the complete picture? Nope, you are just seeing that part of the Johari's window that this particular individual has left visible. There are scars beneath the soul of each person, and trials and tribulations that we all must face. That's part of the human experience, and find me any religious text, of any faith, that says life is going to be an "easy ride." For instance, how could an earthquake happen in a place called ChristChurch? Well, in the Bible earthquakes are mentioned. Terrible crimes are committed, people are treated as slaves, beaten, bashed, cast away, thrown down, and crushed.

Life is what you make of it. In the past year since my son's passing, I've learned a lot more than I ever thought possible, through quiet prayer and reflection. People with hard experiences would pop up at the right time. There's been no burning bush at my front door, nor a loud voice from the sky telling me what to do. Yet I know what my mission in life is now. That's what we are here for. Just like you, I'm a simple, imperfect human being that makes a lot of mistakes. Some may want to call this sins, but whatever you want to call it, there's no perfect person. This goal is simple, and that is to find a cure for seizures that took my son's life, and the lives of others. God never asks us to do something that is beyond our ability. I'm very thankful He hasn't asked me to figure out math problems, because well, that just won't happen.

Yet He has given me the message to "carry on." March forward. The journey to find a cure for seizures is not going to be easy, but it will be done, by the grace of God. There will be tears, doubts, setbacks, and pain. Yet there will also be successes, that I know shall result in positive changes coming from the medical field. Its up to you what you want your life to be about. We are given "free will", but life is a covenant of sorts, to find a way to find out what your life's mission is. In some cases its obvious, others require a more painful road. Yet the one characteristic that we all share, is the strength of the human spirit. Even with the battle of life, and all that is thrown at us, we continue to push forward, and to stand up tall in the face of challenges. Each of us has this, and we must be united on this road to finding a cure for seizures.

Thank You to the Northern Virginia Mennonite Church

This past Sunday, I attended a service with the congregation at Northern Virginia Mennonite Church. Their pastor, Rev. Karl McKinney, was kind enough to allow me to speak about Tommy, Angelman Syndrome, Seizures, and the efforts that Vanderbilt University to stop them. There is something very special about this congregation, as I usually am very nervous when meeting "new people" for the first time, and tend to clam up initially. Yet being here felt like being right at home, and the compassion that I witnessed, is something that I shall never forget. Rev. Karl immediately showed an interested in learning about Angelman Syndrome, and led a beautiful prayer for a cure for the seizures related to this condition, which have negatively affected so many, or taken angels far too early.

The service was a humble one, with a lot of participation by members of the congregation. There was some singing, prayers, and even discussions about important issues that affect us all. After the service, which very much appealed to my heart, I was invited to join Karl and members of his church for lunch and fellowship. Fellowship. What is that? In this church, I would say that its a family, that gets together and shows concern for each other, as well as problems in everyday life. It was a very spiritual day from beginning to end, and I cannot thank Karl or the congregation enough, to share the details of Tommy's life, or why finding a cure for these seizures is important.

Yesterday as I looked up at the cross, I was struck with the notion, that the path to find this cure is the  right one. There's been anger and doubt, but its now time for moving forward and determination. There will always be pain, but yesterday, this congregation's offer to allow me to share Tommy's story, was healing on many levels. I'm not alone, as we all have trials and tribulations in life, its what we share as members of the same family. That's right, we are all a family, of humanity, no matter from which background or land that we come from. The Northern Virginia Mennonite Church is a family of loving people, and may God bless them, and spread their message of peace and love to the rest of the world.

Its A Small World After All-Seizures Affect All

We all know that famous Disney song "Its a small world after all." Yes, we may all not like it, but it is true. You won't catch me humming along to this, or driving down the road at high speeds, with this cranked up on the stereo system. It won't be on anyone's ipod while they work out on that awful treadmill, or sang on American Idol. In fact, this song has the general effect, of being "like nails on a chalkboard." Thankfully, for school children across the world, teachers can't do that on their smartboards.

This blog has had visitors from all over the world, which is proof that both compassion is a shared value no matter what country you live in, and that Tommy's legacy is in every hemisphere. The Vanderbilt program against Angelman related and other seizure disorders "is making its rounds," and people want to become involved in the fight against this medical condition. That is beautiful, and should be a reminder of hope, which is what we all need a bit more of. In our lifetimes we must find a cure for seizures. Although oceans or long distances may separate us, our hearts are all in the same place. Thank you to all who've read this blog, and your support is incredible.

Google has a neat feature that shows hit counts and what countries folks are from, who are reading a blog. It also shows you what operating systems people are using, along with what kind of device is being used. Yawn :). A big thanks goes to the folks in these countries, who've thus proven that this is a global effort, and that is to find a cure for seizures. Please don't "whack me" for not doing this alphabetically, because there isn't enough coffee in my veins, for that to occur at this time. Without further adieu, here are the countries who read this blog: Malaysia, Australia, Russia, France, Greece, United Kingdom,Germany, New Zealand, Canada, United States of America, Argentina, Ireland, Japan, Peru, Brazil, and Sweden. Thank you everyone, as the maps are starting to get dotted, and the efforts to find a cure for seizures is on at full throttle.

Anniversary Dates are Painful Reminders of What Was

When your child passes away before it is "your time," you cannot underestimate the significance of certain dates. The pain is intense, and can leave your eyes full of tears, with an emptiness in your heart that just cannot be fully healed. This bleeding can cut you right down, from a standing tall position, to a curled fetal position that you can't get out of. It has been about a year and a half since my son Tommy passed away at age five, from a seizure related to his Angelman Syndrome. Certain days, especially birthdays, the anniversary day of his passing, and the holidays are a challenge to get through. As a father of a son who's gone to God, I am trying to better view these days as reminders, of "what were, but are no longer a reality."

My son's body lies six feet deep, yet I know in my heart of hearts, that his soul is with God, who is the ultimate protector. Certain days and even times of his passing, can bring back a torrent of memories. I can see Tommy smiling or laughing, playing with his tiger toy that is sitting in his playroom. Its strange not seeing him with that tiger, and the emptiness that seeing this toy creates, is sometimes so painful. He's not bouncing around, making the odd noises he used to, or lighting up a room. Often I sit by his grave, and just think about what could have been. Yet the reality of the situation then tears into every bone of my body, and I realize that I just don't have control over these matters. The lights, sirens, and rush to the hospital flood into my conciousness, and there's no way to make them go away.

There was an elevator at Tommy's last school. This brings a smile no matter what, because his teachers and staff would encourage him to walk, due to his fascination with this people mover. Yet Tommy was a people mover, and while I wish I could get one of his awesome hugs right now, I have to cling on to those memories and be thankful that they did happen at one point in my life. Life is an elevator of sorts, with its ups and downs, or trials and tribulations. There will be no getting over his passing, and as a father, I must contend with the fact that there's a Father with much more authority, and that I must place my trust with Him completely. These days of pain are a reminder of Tommy's life, accomplishments, and ultimately the terrible day of November 4th, that will live forever in our family's hearts. Yet at the same time, they are also a reminder of what he was able to accomplish, and for that I'm a very proud man.

Life Isn't Fair, But Its What You Make of It

A couple of years ago, a man in India anxiously awaited for sixteen of his family members, to return from a trip overseas. Last year Haitians were trying to get a foothold onto a stronger country, that was showing some progress in key areas. A few weeks ago, a British man walked around an airport in Moscow, getting ready to wait for friends in the international arrivals area. Disaster struck. The man's sixteen family members, including his wife, children, mother, father, and cousins perished in a plane crash. Haitians were exposed to a "hell on Earth" in which hundreds of thousands lost their lives. That British man was blown to pieces in a terrorist bombing, along with countless other innocent souls.

Life is unpredictable, and to put it bluntly, unfair. There's something to be said about the cliche of "enjoy every moment, you never know when it will be your last." My son's last was on November 4th 2009, and this past week, I've felt a lot of anguish, pain, and guilt. I think about him everyday, as he would this summer be celebrating his seventh birthday, and had just learned to walk unassisted before being taken away by a seizure related to his Angelman Syndrome diagnosis. It hurts to think about finding him unresponsive, and while the doctors told me he "didn't know what hit him," I have no idea what he faced when that seizure caused him to go into cardiac arrest. Did he feel pain, was he gasping for breath, was he wishing someone was holding on to him as he crossed over  to God?

The past week has been difficult, and I don't know what has triggered it. Although everyday isn't easy, some days are certainly better than others. Yet at the same time, this pain doesn't give me an entitlement to feel sorry for myself, as so many have had to experience heartbreak in their lives. Imagine the pain of those parents of Challenger astronauts, as they watched their loved ones get into that rocket, and lose their lives seventy three seconds later. Or the Georgian olympians parents, watching their son die on the ice at the most recent winter games. I'm not alone, as from the beginning of time, some people have had to be in my shoes. Some are going through the first stages right now, and my heart goes out to them, because there's nothing in the world worse than losing your child.

Yet what about that man in India, who's heartbreak was multiplied sixteen times? That seems like a burden beyond comprehension. Or scores of Haitians who lost their entire families, while loved ones realized that their mom or dad wasn't coming home from that Moscow Airport that was full of human carnage? Its okay to feel the pain, and to acknowledge it, but someone has it worst than I do. They are carrying on, with emotional baggage that's so heavy, that it might cause their heart to bleed from tears of the soul. Everyday you get up out of bed, and end up in your bed, is a blessing. I realized that yesterday, as going through "one of those days." There are no guarantees, and while the Sun may rise in the East and set in the West, there's nothing at all to guide us through this world but simple faith.

Seizures Don't Discriminate

It does not matter the color of your skin, or what religion you choose to follow, seizures don't discriminate. For far too long, the human race has focused on these aspects, as if they have something to do with character. They do not. Look at religious battles for a moment, and think about the sheer stupidity of them. All religions have blood on their hands, that's right, all of us have ancestors that were guilty of this in one form or the other. There has been violence between Protestants and Catholics, Sunni Muslims vs. Shiite Muslims, Reformed Jews vs. Orthodox Jews, Sikhs against Sikhs, and of course these religions against other faiths. Its time for us to stop focusing on petty differences, and while its okay to believe in one answer, there's much to be said for "co-existence."

Yes, those silly bumper stickers get old to see, especially when you've counted five of them when stuck in rush hour traffic. Yet, reading the Washington Post this past week, there was an article about an older black man brought in by a white family. Mr. Bronson was too old to take care of himself, and something that he said is quite revealing. Even during the Jim Crow days that were nothing short of oppressive, Mr. Bronson told his children "Everybody is in the same boat regardless of color. Everybody belongs to the Lord." The same could be said about religious differences as well, and his statement is especially appropriate with regards to seizure activity.

There's no doubt in a higher power, because Earth is simply not a gaseous anomaly, but rather a place created by God millenia ago. Seizures cut across every color, religion, economic background, and everything else. They don't discriminate. That's why we should look at the seizure issue, as irrefutable proof of being something that everyone can agree on. We can together be united against this dreadful menace, and extinguish it forever, through the fine folks at Vanderbilt University and other instiutions that are searching for a cure. I know it will happen in our lifetimes, if we can all take a stand together, because we are very much in the same boat, just like Mr. Bronson stated.

This blog has reached all corners of the globe, and its through technology, that the world has become a smaller place. In a few weeks, I plan on listing the countries of which people have been reading it from, and it means a lot that folks of numerous lands have spent some time looking at it. We can unite, regardless of our geographic proximity, and destroy these seizures once and for all. It is too late for my son. It is too late for many children. However, with each step in this battle, we will become more united and closer to finally stopping this menace that has impacted the lives of so many. These folks include every color, every religion, and every economic group. Seizures do not discriminate, nor should we.