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 .
Wednesday, March 13, 2013
Veggie tales live
What a great time meeting the promise radio station and seeing veggie tales live in Jacksonville. Noah had a blast and we handed out 150 flyers about schizencephaly. Looking forward to doing an interview with the promise radio station!