Carson’s Story

Carson was born August 18, 2011 on his big sister’s 5th birthday. Upon his arrival we knew he would have some medical conditions such as heart complications, cleft lip and palate, and fluid on his brain. Carson would be left undiagnosed. No one seemed to know what was wrong with him until August 20, 2013. We met Dr. G and he immediately knew it was CHARGE syndrome, so he was clinically diagnosed that day, and almost a year later genetically diagnosed. Carson has had 23 surgeries, countless hospital stays, he is blind in his left eye, deaf in his right ear, and has had heart, lung, and kidney complications, as well as many other medical conditions, but he does not let that define him! We were told he would never walk, talk, or eat by mouth, all of which he does today! Although 90% of his nutrition is gained from his tube feed he does enjoy eating orally as well! He is in 5th grade in a typical class room and is on Merit Roll all A’s and B’s!