Joined Feb 26 2013
46 years old
I have an 8 yr old little boy with RS, also Gomez-Lopez-Hernandez syndrome. He was also born with esophageal atresia and tracheal esophageal fistula. Had surgery at 3 days of age to repair esophagus, 3 more surgeries to dilate esophagus, 3 eye surgeries. He is NOT shunted. He does the typical head shaking, has alepecia on both sides of his head with a little sprig of hair in the center of each. Did not sit up til 1st bday, didn't walk til 2. Currently in 2nd grade and acedemically on target with his peers.