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.
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