October is Rett Syndrome Awareness month.
Raising awareness about Rett syndrome is important to me because my seven-year old niece has Rett Syndrome. It’s a terrible developmental disorder that affects mostly little girls.
The children who get it start to do this hand washing motion and then pretty soon they stop looking you in the eye.
And then, it gets worse. Much worse.
They get seizures. They lose the ability to swallow, talk and walk. In Caroline’s case, her body started to go haywire almost immediately, so she never learned how to do these basic tasks.
My brother Tony (pictured) asked me to help him raise awareness about Rett syndrome next month and I’ve agreed to do it. We’re hosting a post-a-day marathon to raise awareness about Rett syndrome on Caroline’s Cause, the blog where we organize charity events to benefit Caroline.
Tony is an amazing person.
As you can see, he is (literally) a giant among men. In high school, he ended up in the same senior class as me as a result of some strange (but banal) circumstances. Tony and I couldn’t have been more different seniors. I was quickly expelled in the first six weeks. Meanwhile, Tony went on to win the Pennsylvania AA unlimited weight class wrestling championship in 1979.
And this is in Pennsylvania, a state notorious for having some of the best high school sports programs in the entire US. Pennsylvania, the home to huge farmer boys who wrestle hogs and cattle for lunch. Dude, Pennsylvania! Who would have guessed that such a big imposing guy would end up being tasked with such a huge nurturing life challenge?
I encourage you to visit the blog now and during the month of October.
I’ve been writing these stories up for the last few days now, and I’m so excited. If you’re like me you expect the worst from most people and you’re usually not disappointed. But I’m just amazed at the remarkable people in Caroline’s life, like Vicky the firebrand physical therapist or the wonderfully unreserved Dr. Caso, Caroline’s pediatric dentist. I’m sure there will be some sad bits, and some stuff to make you think, but I predict you’re going to really enjoy hearing about these people.
Plus it would just mean a lot to us to see some hits.
So come check us out on the Caroline’s Cause blog. Or give us some facebook love.