January 2008 – Nicky showing his flexibility! This is one of the few things he can do with his body. He may not be able to walk or move much, so it’s always fun for me to see this fun/crazy side of him. In this picture Nicky was 12 and he hasn’t really changed much at all, he truly looks the same!!! That smile and the ability to not think about his condition and concentrate on doing what he can do is something I truly admire about him. He does not dwell or despair on the ugliness of his EB. He loves his routine and does what he can do instead. I don’t know if there will ever be a cure for him, although that’s what I hope everyday, but if he’s happy on a daily basis and he’s able to smile and laugh, as a mom, I know I have succeeded.
More of Nicky’s story in the book… Thank you so much for your support!!
Love & Light,