Story about CHARGE Syndrome , Autism.

Ellie Grace

Sep 7, 2017

By: Anna

Year Condition Began: 2015


Our baby girl was brought into our lives Jan 2015. What we thought was going to be a healthy baby girl Only to find out our lives were forever changed in ways we never thought would happen to us. Ellie was born with a Bilateral Cleft Lip and Palate, TEF/EA, and failed hearing screening. We knew things didn't look good. After 3 month in the NiCu we were able to bring our baby home. We learned in that 3 months what true love was. We had never seen an individual fight so hard to live. We were determined to find out what is wrong and save our daughter. Doctors began testing and research for months we were finally given the diognosis of charge, Chd 7 malformation, and autism. Finally we had answers. Ellie began intense therapy and we were accepted into the charge clinic. Today Ellie is thriving and living life as she can. She is deaf, g tube dependent, developmentally delayed, and colobama of both optic nerves. Our baby is a fighter. We can't wait to see what's next in our journeys
Story about CHARGE Syndrome

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