It is so painful to lose a child. There's no words that can be printed to adequately describe such a tear in your soul, other than to tell you about my experience. Others have gone through this, and it is my hope that we will not lose another child with Angelman Syndrome, or any other condition that has epilepsy as part of it. Holding your lifeless child in your arms is so painful, and watching a crash team stop CPR while you hold your boys hands, is like dying yourself but far, far worse. I'll never be able to get that image of my boys lifeless glance out of my conscience, nor will I ever forget that howling of anger that emanated from my very being that terrible night in November of 2009.
Right now, a parent is with their child enroute to a hospital, as they are seizing up. Another parent is at a medical center, as another crash team of doctors and nurses is trying to get the seizures under control. A third parent is at home, having no choice but to insert medicine up their child's rear, to try to get their face to stop turning blue from a lack of oxygen. This is the reality of the situation, and it is too late for my son, and others who've been in the same lonely and full of water from tears boat. I wish that this was not going on right now, but it is. It has yesterday, it is now, and it will tomorrow, unless we step up to put a stop to this.
The Vanderbilt Kennedy Center Angelman Seizure Project is our best hope. Their research team is working around the clock, to make sure that what happened to my son, and other parents little ones never happens again. What does that mean to you? I am nothing more than a mere, simple man, who will never have a lot of money or be famous. That's fine with me, as I do not need anything more than the love of my family, and a roof over my head. Yet, I donate some money to Vanderbilt Kennedy Center's Angelman Seizure Project. It does not have to be a huge amount, but wouldn't you love to be a part of something so special,as to save a child's life? There's no price on that, whether its a donation of $1 or $1,000,000. They are so close to victory, and it is up to us to cross that finish line.
Please, if you can, consider helping the Vanderbilt Kennedy Center Angelman Seizure Research Project. They are at http://kc.vanderbilt.edu/site/giving/default.aspx. You can donate online, and if you mark it as "Angelman Seizure" your kindness will go to help those in the greatest of need. Spread the word on this fine organization, that is a part of Vanderbilt University in Tennessee. If you saw Darius Rucker's "Music From the Heart," on the Country Music Awards this is the same place. Its time for parents of angels, children, to stop having to worry about "is this the time?" There should be no more children passing away at such young ages, from a seizure that must have a cure. This is the best hope, and every bit helps. Thank you for your compassion, kindness, and reading of this plea for a cure. Its up to you and me, to make this happen.
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