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, April 28, 2013
The official banner raising for schizencephaly awareness
Yesterday we raised the banner that will in from St Augustine's post to Halifax Canada and them to race in the tall ship challenge. The banner will also be seen in Washington d c. And new York and ports all across the united states