Thursday, September 13, 2012
The FAST Track
Imagine you bring your brand new baby home, and snuggle and coo and make faces and fall completely in love. You start to work out who that baby is going to become - does she like to listen to music? Does he like to be bounced? What will these interests become in adulthood?
Perhaps your older child is making plans, too. When A-Train was tiny, Bean once told us he wanted a different baby - one who could walk.
And then, sometime late in that first year, or perhaps sometime in your child's second or third year, what if you discovered your beloved baby has a genetic disorder and might never walk, or might now have and later lose that ability? Or might have seizures. Will require constant care. Now who will this child grow up to be? And what about the excitement of the older sibling?
In my family, there are two such kids; The Beast's cousin has Rett Syndrome, and my cousin has Angelman Syndrome. I have such fond memories of both of these kids as babies and toddlers - my cousin as a happy, slobbery cherub in everyone's arms at my sister's wedding (he's still happy and slobbery!); The Beast's cousin dancing at our wedding until we all thought she might fall sleep on the dance floor. They were so full of possibility (who would they be? Would he always be so social? Would she always love to dance?). And, though neither can talk, and they each have motor difficulties, and the list of challenges goes on and on, they are still full of possibility.
There is promising research going on to treat or even cure each of these syndromes, and a breakthrough in one could benefit the other as well as other genetic and neurological disorders. Each of these disorders has been cured (yes! cured! not just treated) in a mouse model! There is immense hope for these kids and their families.
Currently, Chase Community Giving is having people vote on Facebook for various charities to split $5 million in grant money. The Foundation for Angelman Syndrome Therapeutics (FAST) is, at this very moment, in 10th place. Can you help me lift them up so they can share in this, and help these babies shine for everyone as they do for their parents and for me?
You can click here to vote for FAST!
For more information, you can visit FAST, check out this post from The Feminist Breeder, and read this post by a father whose son was very recently diagnosed with Angelman Syndrome.
Please vote today! It won't cost you a dime! And please share one of the above links or this post! Can we raise FAST to one of the top spots?!?