Its been almost four years, since our son Tommy passed away. Our family still sheds plenty of tears, and we will never get over this, ever. Yet none of us wants people to feel sorry for us, and there are plenty of other "Angels" who've gone to God far too soon. I am proud of all organizations that are working for new developments, and ultimately a cure for Angelman Syndrome, which is caused by a deletion of Chromosome 15. It is named after Dr. Harry Angelman, who was able to discover what this condition was, which ultimately led to blood tests and clinical diagnoses for so many children, and even adults who never had that. I am thankful that Dr. Angelman was so persistent, and listening to his interviews, I get chills down my spine, as I do believe he was a very compassionate man.
Our first walk for the Angelman Syndrome Foundation(www.angelman.org) was a painful one. While I was glad to learn we weren't alone, it led to a lot of tears, although we were able to see that intervention among younger angels greatly improved their chances of walking and being able to enjoy life more. Each one afterwards was full of joy, although the one after Tommy's passing, led to even more tears. These were both good and bad, as a hug from a young lady, made all of the difference in the world. As I type this, the chills have come back, because that was nothing short of a spiritual experience also. Her and her parents know who she is, and because this blog is public I can't post her name, but that hug still is felt even right at this moment.
The ASF is both the oldest and largest Angelman Syndrome group, and its resume is very impressive. First of all, they've delivered more grants towards research than anyone else, plus doctors and other medical professionals are more aware of AS due to their efforts. While there have been some difficulties, I must say that they do a fine job, considering they don't have the resources of larger and more established groups, such as the Susan G. Komen's or American Cancer Society's reach. Yet they are doing more with less, and their financial transparency, shows why they get such high scores on Charity Navigator. Their breathtaking research at UNC Chapel Hill, has been published in Nature Magazine, and could lead to not only a cure, but other treatments for those with conditions such as Alzheimer's. They should be applauded for this, and a lot of the blood, sweat, and tears provided by parents and those who love angels, is exactly why the ASF has been so effective. Their executive board and staff work sixteen hour days quite frequently, and have been known to take calls late into the night.
I wish I could attend the ASF walk this year. They are being held all over the country, but due to a recent vacation, its impossible to get the day off. Next year for sure, but I will be praying and walking in spirit, with those whom are at all of the locations across the country this weekend. If you can, I hope that you will consider making a donation to the Angelman Syndrome Foundation. Each one is tax deductible, but what really matters, is you are giving so many parents hope, even those of us who have sadly lost one of our angels to seizures, accidents, or other related medical events. I miss you Tommy, each and every day. Yet I know you are walking in Heaven, with a whole bunch of other angels, and probably laughing and smiling it up with all of them.
I'm sorry you weren't able to attend a walk this year but you were with all the walkers in spirit, just as Tommy is always with you.
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