This is a blog about my journey with Noah and a rare disorder called Schizencephaly.
I share stories of other children, Families, and of course resources for families.
We Are RARE Is a non profit for Children and young adults suffering from a very rare neurological disorders like schizencephaly. Noah is 13 and missing over 40% of his brain .
Sunday, June 2, 2013
Watch "VIDEO0715.mp4" on YouTube
This video hopefully will help other families understand What these injections are like and Why we do them. They will help with Noah's right arm and upper scoliosis issues