Our Young People Get it-Helping out with Angelman Syndrome Research

Growing up, I never harbored any ill intent towards people with special needs. They were simply just other human beings, who were passing me by in the high school hallways, that I attended while just trying to get good grades and go on to the next journey in life. It was an honor and a privilege to have an autistic man in my Boy Scout troop, as he broke down a lot of barriers, and I'm proud to have heard later on that he got his Eagle Award. Yet, I was never passionate about working with kids or adults with special needs, even though I now realize in hindsight that they are among the best people in the world. They go through a lot of challenges, yet they refuse to give up, and shamefully I still take for granted my talents that some don't have. Of course, I don't have a lot of talents, but I don't have to be afflicted with something like Angelman Syndrome. This is caused by a deletion of chromosome 15, and in 2004 my son Tommy was born. He showed a lot of problems right away, was labeled a "failure to thrive baby", screaming for hours into the night. After some time, we got a diagnosis for him, and it was of course the condition named after the discovery of this, none other than Dr. Harry Angelman.

Angels as they are known, are beautiful boys and girls. They are so innocent, and while they may not speak, you can see everything in their eyes. Getting a hug from an angel, is something I recommend to everyone, because once you do you will feel something that is beyond spiritual, and far past the common realm of what we experience as joy in our lives. Tommy sadly lost his life in 2009, to seizures related to AS, and not a day goes by when we aren't thinking about him, nor are a lot of people that he met while he was on earth. I was very much moved yesterday, when I found out about a young lady, attending a school in Connecticut donating half of her lemonade stand proceeds to the Angelman Syndrome Foundation. (www.angelman.org) Her name won't be posted here, but from what I have learned about her, has left me impressed as she "gets it," which sadly my generation growing up did not. She is nine years old, and has the heart of an angel, as she is friends with both another young lady, who happens to have a sister with AS.

She spent a day of her time, helping out those, that will have that cure if the cards are playing as they seem to be. The past few years the ASF and other groups, have had great success in discovering potential cures, along with developments that can help people with Angelman Syndrome. One of her statements is impressive for someone her age, and its something that all parents, or those who love an angel can relate to. That is, "I wish she could talk for one day, and tell me what's one her mind." With angels eyes, so many wonder what they wish to state, and God willing that day is coming soon. The research at University of North Carolina Chapel Hill, and others is showing promising results. Also with Angelman Syndrome, as it is on the autism spectrum, might provide an eventual "blood test" instead of a clinical diagnosis, bringing relief to so many families not just in the USA, but around the world.

I hope to one day get the chance to thank this young lady personally, and many families across the US and in other countries, applaud your efforts to find that cure. Know that you not only made a difference to them, but also to so many, that miss their angels but still hope for that moment to happen. It would be a joy, tears of so many hearts, to hear an angel say exactly what's on their minds. I can't speak for them of course, but I feel that they have a message of love, because while this life is often confusing, there's just something about angels that seems far and above our understanding. For this young lady, you not only have my admiration, but you are also proof that "the kids are alright." That song came out prior to my birth, but what it rings is true, and some things do get better with time. This current generation of young people are incredible, and they are so giving with not only their time, but also with their hearts in an effort to help so many others. God bless you and thank you for taking a stand, and for not only helping out an organization that helps so many families, but also may allow angels to one day speak their minds.

The Majesty of the Caribbean Sea

There is something spiritual about the Caribbean region, and the sea that has its name. This past week our family went on the vacation of our lifetime, and there were indeed a lot of smiles and laughter. We met so many kind people from around the world at the resort we stayed at, and also many citizens from Mexico as we traveled around the country. It was an honor to learn more about the Mayans, whose civilization I began to get more of an understanding with years ago in a college course, where for once I did not skip a class due to how fascinating they are. Meeting Mayans was remarkable, and while much of their civilization was overtaken, their ideas live on in so many fields. As my wife and I watched our son who is now three, and looking more and more like his brother we so dearly miss, brought so many grins, although I do hope that he will loosen up a bit eventually. He did make a few funny comments during the trip, and seeing him in the pool, reminded us of Tommy who passed away in 2009.

One night I strolled the grounds of the sea, and just looked out, as the Sun went down over the horizon. Tears did go down my face thinking about Tommy, and other children I've met with Angelman Syndrome, Rett Syndrome, along with other conditions that so deserve a cure. My prayers I hope are answered, as I prayed for that and for so many families, who have been in our shoes. Some have been quite recent, and my heart breaks knowing the road that they are now traveling on, because it is one fraught with pain and one that no parent should have to. Yet it is the way of life sometimes, and that is why each and every day is to be considered a blessing. As I looked up at the moon and the sea, I prayed for these parents, these children, and all of their families. It felt good and painful at the same time, as there are no words to describe what it felt like.

A lot of thought went into this walk along the white sands, and the water that was so turquoise in color. While I do believe in Christian tenets, I prayed for all regardless of faith or lack thereof, and felt something among the winds on my back.  Those winds kept me standing. May they keep others as well. Life is such an arduous journey, and our world's history has been one with many challenges, both at a societal and individual one. It felt good to get this recharge of the batteries, because while that is a cliche, I felt like a boy again while playing with the sea lions at an aquarium. There is now some energy again, and while I'm not sure where it is going to lead, I pray that God shows me the correct direction and that I follow that exact trail. God be with all of those who are enduring the loss of a child, because while you never will get over it, you can get through it. Also, to those who have children with a medical condition that needs a cure, help is on the way, as our collective awareness at this point in time is better than ever. The following years with these developments, along with the genome and brain projects are promising. May they bear fruit, because there are so many people on this planet, that are waiting for the time when that light bulb turns on.