Story about Cornelia de Lange Syndrome .

Diagnosed at birth

May 19, 2017

By: Amanda

Cornelia de Lange Syndrome

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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.