Its too late for many parents, as there are parents, grandparents, uncles, aunts, siblings, friends, and so many extra family that you didn't know, mourning the loss of a child with Angelman Syndrome somewhere. When Tommy was born his diagnosis was a slap in the face, as it was a wound, that so many know too well. It takes a lot to digest the news, that your child will probably never speak a word, and that in just a few years you'll probably be administering seizure meds rectally to them. Your dreams of that precious little baby becoming Prom King or Queen, along with maybe just being a happy kid on the bench of the baseball team are over. Its up to each and everyone of us to accept such news, which I declare to be like getting hit in the cranium with a fly swatter weighing a thousand pounds, but to each person being unique there are a multitude of responses.
Right now, there are probably a lot of young parents who just found out their child has Angelman Syndrome. Its going to be a game changer of your entire life, one that is going to have profound ramifications. I pray that you do not have to end up in the heavy boot category that so many of us have, which is to literally put the dirt on your own child's grave. There's nothing worse than that, but it is my hope, and there's reasons more than ever for optimism, that a cure will be found. Groups such as the Angelman Syndrome Foundation, Angelman Network, FAST, and a host of others are generating both awareness and potential treatments. Never in the world's history, have so many discoveries been made so fast, and this is due to the passion of angel families around the world. There's no giving up, or letting off of the accelerator, because I agree that the chances for a cure have increased at an impressive rate.
A lot of what's going on right now, is far past the scope of my simple Criminal Justice background, but for those whom find Biology and Chemistry fascinating, it would behoove you to go to school and become a member of the greatest scientific discovery of all time. Angelman Syndrome is the only autism spectrum disorder that can be identified with a blood test, and mice have already been given this deletion of chromosome 15, along with being cured completely. These aren't minor accomplishments, and these are prior to the recently revised brain project, that mirrors the DNA one of years ago. Scientists figured out how to do DNA mapping, with the brain study at NIH and other institutions, its only a matter of time before the curtain hiding answers is widened just a bit more.
To the parents of a child just finding out your child has this condition, my heart goes out to you, but know that you have lots of families and groups ready to assist you. Its a group collaboration, and your family will grow quite large, although it will have a lot of different last names. That's the beauty of it, as while AS can be challenging, you get to meet some of the most amazing people. Even after our unexpected terrible night in 2009, I can literally say we have been blessed to still do the same, and our entire family is grateful for the support and understanding of so many. We are on the sidelines now, but the smiles of angels carries us on, as does the hope that young people with AS today might just be cured tomorrow.
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