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 .
It's the moment I have waited for for a very long time Tears of joy!
It has been two weeks on Wednesday since Noah's spinal fusion and I will admit fear was a huge issue with this one.
Never did I imagine seeing my little boy look so banged up. His eyes were bloodshot, black and blue with a very swollen face.
The night before I was prepped with the fact Noah very well may not make it through or quite possibly require a trach for the rest of his life.. Scary and sobering all at the same time.
After xrays the day before we learned Noah's scoliosis had reached 94-97 degrees which is 40 degrees more than just a year ago which convinces me that scoliosis is indeed a huge part of schizencephaly. We waited until Noah was old enough to avoid multiple surgeries through the rest of his life....one and done! But holy cow scoliosis is hell. The constant fighting it, struggling to make our own braces, 6 years or positioning and holding off to avoid going back under the knife. It would appear that all that hard work made a difference and Noah will never n…
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