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Tricia D.

May 22, 2015

I am ... A Caregiver or Family Member

  when I was 5 months pregnant I learned by unborn child Noah had suffered a fetal stroke. I was told he would never live past his first few days.

as a result of the fetal stroke his brain developed clefts or missing area which resulted in a rare disorder called Schizencephaly.

it has been 15 years. he just turned 15 may 19th. I just want to say that we are not defined by our uniquely able challenges, instead we strive to prove the medical world wrong. I am so proud of how far we've come and the children fighting this rare disorder now have a national day of awareness for Schizencephaly caused by fetal stroke, we are limitless and empowered because of the vast knowledge we have now that was not available 15 years ago

 

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