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Deafblind Awareness Week – Carson’s Story

Newborn baby with a cleft palette Young boy astride a light brown horse on a sunny day Young blond boy holding a yellow frog

Carson is 12 years old. When he was born on August 18, 2011, we were aware of his cleft lip and palate, and his hydrocephalus. Aside from those issues, coming coming into this world we were clueless as to what to expect. My whole pregnancy I was told Carson was a little girl, but to our surprise he was definitely a boy! Right away he was taken away as he was not breathing when he was born. To our surprise we were sent home 3 days later with no NICU stay and no formal teaching on our how to feed our newborn with a severe cleft lip and palate. Early on in the next few weeks we knew something was wrong with our baby. To keep it short, for 2 years we were left undiagnosed and shuffled from doctor to doctor until finally we got a doctor that listened to what mom had to say and was noticing with Carson. Carson has colobomas in both eyes. He can see from his right eye, but he has zero vision in the left eye. With glasses Carson is able to see using his right eye. He is completely deaf in his right ear and uses a cochlear implant, and is moderately deaf in his left ear using a hearing aid. Carson was diagnosed at age 2 with CHARGE syndrome and has defied all odds against him. He continues to this day to prove doctors wrong and show that he’s in charge of CHARGE! 💙

What would you like to tell other people about deafblindness?

Never judge a book by its cover. Looking at Carson from afar on the outside you would think he’s “typical” but getting to know his care and extensive medical history, both past and current, you’d understand his struggles a little bit more. School is our biggest stressor as many of the staff in our district tend to think he’s “exaggerating” when he says he can’t hear or see something they are teaching. Thankfully Carson is learning how to advocate for himself when mom is not there and gets his points across! We always say, “Remember knowledge is power and power is knowledge”. We are always raising awareness about Carson’s syndrome and other health/medical issues!