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Story about CHARGE Syndrome .

My CHARGEr son, Joshua

May 16, 2017

By: Sarah

CHARGE Syndrome
My son Joshua was born April 28, 2009. He has 8 heart defects, 2 strokes, a clinical CHARGE diagnosis (he doesn't have the coloboma), epilepsy, central apnea, hypopnea, Stage 3 kidney reflux, deaf, malformations in his ears preventing him to use CIs, bivid uvula, choeneal stenosis, T3 hemivertebra, micropenis, hypermobility, and a limited life expectancy. He's had 11 surgeries so far including 3 open heart surgeries and 2 cardiac catherization a. The little boy that I see always smiling and happy seems a far cry from what's on paper. He truly is a miracle to me

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