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 .
This is the story of my son Noah.
When he was born my mother called him her angel with a broken wing. Since then hundreds of families have embraced
this name to all our children with Schizencephaly November 7, 2000, and I
was now five months pregnant with my second child, and although this child had
not been planned, I was just as excited as the first time. I was no pro to pregnancy, but I knew
something was different and being American Indian My mother always told me to
go with my intuition and this time I just knew something was so different from
the previous pregnancy,. This feeling had been there the first 5 months, but it
had burst as a strong fear by now.. My doctor insisted I was working myself up (a
term I since grown to hate) but in my heart, and even as a child, I had
prepared myself for something big, but I had no idea until this day and at this
month I went against my doctor’s orders after
repeatedly telling him I could feel this child tensing up inside me. My belly would