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...
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...
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...
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...
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,...
5 people with CHARGE Syndrome have taken the SF36 survey. Mean of CHARGE Syndrome is 2306 points (64 %). Total score ranges from 0 to 3,600 being 0 the worst and 3,600 the best. Take the SF36 Survey
