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, June 5, 2013
Noah is resting after a long day
This day was filled with such defeat. Noah finally fell asleep around 4am after excruciating pain from his right leg
We are praying for no surgery but it's not looking hopeful. We do not have a cause to the collapsed femur