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CHARGE Syndrome stories
My Sweet Layla Rose, who was born full term, was born with preexisting conditions that were not detected during my pregnancy. At the time of birth, Layla experienced heart failure due to left to right shunting in the setting of a CAVC (complete atrio...
Views: 705 Jul 24, 2017, 2:22 PM by Reina
My son, Henry was born 1/31/2013. he has CHARGE Syndrome with Colombola, no cochlea, a little heart defekt, delay in his development, kidney problems (only 1 left), doesn't communicate BUT is the most happy little Henry. We call him Sir because he is...
Views: 495 Jul 24, 2017, 2:25 PM by Tina
Nací el 05 de cotubre del 2001, siendo el 06 de octubre de ese mismo año mi primera operación, de atresia del esófago. Al año me operaron de comunicacion inter auricular y estenosis de la valvula pulmonar. Luego a los 3 años me diagnosticaron s...
Views: 459 Jul 25, 2017, 7:16 PM by Piero Franco
My son was born in 1998. He has CHARGE - diagnosed within 24 hours and a whole list of additional issues they initially thought was Chromozone 6 Ring Syndrome.. After almost 100 surgical interventions - including 2 HEART, 2 eye, etc.. He is living in...
Views: 438 Jul 25, 2017, 10:59 AM by Angela
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,...
Views: 405 May 16, 2017, 5:40 PM by Sarah
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