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Story about Cornelia de Lange Syndrome .

Diagnosed at birth

May 19, 2017

By: Amanda

Cornelia de Lange Syndrome
I was a little different than anyone else.  I had funny dwarf size/shaped features.  Afted a bit of investigating, my mum was informed of my condition.  With many appts at the local childrens hospital we learnt more about Cornelia de langes syndrome.  As  i grew, my bones also grew abnormally.  I needed heaps of surgeries to correct everything.  After 3 lots of surgeries I told mum I'd had enough.  Everyday is a struggle as I have weak bones everywhere.  I am grateful for how everything has happened and the fact, I've lived a "normal" life doing things "normal" people would do. 

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