I will never forget my first Angelman Walk, that supports the Angelman Syndrome Foundation. The year was 2005, and it was about eight months after finding out that our boy Tommy had this condition, that is caused by a partial deletion of chromosome 15. I'll be completely upfront, because that first walk was very painful for our entire family. I cried so many tears, seeing "angels," and realizing that this was Tommy's future. He would probably never talk, and seeing so many angels of so many differing abilities, just broke my heart, especially for the older ones that did not have the same early intervention that Tommy was blessed by. I remember my aunt hugging me as I cried, and while I did finish that walk, there were just so many tears.
Yet I learned a lot during that walk. While not a "trail of tears," such as the Nez Perce had to endure, it was with heavy shoes. Each couple hundred of feet, was a sign that showed what Angelman Syndrome was, and I learned from these a little bit more. Yet what I felt meeting other parents, and angels, cannot be described in words. Rather I felt a kinship, a family that I had not meant, but was glad to have in my corner. The first walk I attended was in Chantilly, VA, and this of course for the Washington D.C. Baltimore area, has now been moved to Columbia, MD. It takes hundreds of volunteers, and thousands of hours to set up these events, and I am grateful for those who've spent the time doing this.
Back then in 2005, if I remember correctly, there were only about nine walks throughout the USA. Now there are over twenty, where families can get together, and to meet up in person, along with sharing strategies to help their little girl or boy do the best that they can. I am forever indebted to so many who reached out to us, when we found our son's diagnosis, and the Angelman Syndrome Foundation provided us with a wealth of information. True we had some luck on our side, as our pediatrician already had an angel in his practice, but many medical professionals rely on information from the Angelman Syndrome Foundation. That is why there aren't so many "What is Angelman Syndrome questions" anymore, although much work still has to be done in this regard.
I have enjoyed each walk. Last year I skipped out on, as I was severely depressed, about Tommy's passing. Yet I look forward to going to this years, as I have with and without my boy. In 2011, it was a joy to be the kids entertainment dude. Yeah, I never thought that would be my forte, but it was fun just having angels and their siblings dancing around, along with singing karaoke. Getting those angel hugs meant so much, because while there were tears, many of them were with a joy that's impossible to even describe. Yes, the tears went down my face, but there was a smile with them. Each year there have been more families attending, and I'm excited about the one to be held in May of 2013.
This is the time of year, when our holiday spirit must be in full force. If you can donate to the Angelman Syndrome Foundation, you are helping so many families, along with research that is happening at breakneck type of speed. There have already been some discoveries, and with each one, its a building block for what all families want, and that is a cure. As the end of 2012 rolls, this is a great time for giving, because not only will you be helping out people with Angelman with a donation to this foundation, that is the largest non-governmental research contributor to finding a cure, but you will also be able to make a tax deduction on your upcoming headache from the IRS. It is a win-win, and there are also calendars available, that show children and adults with Angelman Syndrome, that will lighten up the mood of even the biggest Grinch in the world.
Going to the walk without Tommy, always leaves an empty spot in my heart. Yet I must carry on in his honor, along with all of those angels who've gained their wings in Heaven. Today his younger brother was asking all about him, and darn right he will be at the National Walk this May. He will get to see angels, and may he get those hugs, along with seeing those smiles and laughs. I believe very strongly in the Angelman Syndrome Foundation, along with families who have gone to great lengths, to make it is what it is today. This is on charity navigator, completely transparent, and full of love. Thank you to all of the folks at the ASF, along with the countless volunteers, parents, and families who've supported it over the years. On to a cure.
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