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?
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