Brendan C.


Brendan was born in 1999 and diagnosed as profoundly deaf at birth. We had no family history of deafness but were told we were lucky he as “just deaf”. Over the next two years we discovered he wasn’t just deaf – that his balance issues and motor delays indicated he had Usher Syndrome. Confirmed by a retinal exam, we were told he’d go blind as well – he’d probably not have enough vision to get his driver’s license at 16. Because Brendan received his first cochlear implant at age 1, and early intensive speech therapy, he hears and speaks normally, and even plays the piano. At 14 he is doing well in school, at the same level as other kids his age. He loves reading, movies, board games, video games, Legos, playing/fighting with his younger sister, parties with friends, and visiting his cousins. Brendan says his deafness is “fixed” by his cochlear implants, and he is right. But there is currently no fix for his vision loss. He has such  limited peripheral vision that he will not see anything at or below waist height, and will even trip over a chair in the middle of a room. At high school, backpacks on the ground are a tripping hazard, as are curbs, rocks, garden hoses – anything on the ground. Also light poles are unseen in his periphery, as well as low hanging branches, mail boxes that stick out at the side of a street, and car side mirrors in parking lots. When he drops a Lego piece, he cannot find it. The doctor’s prediction about not seeing well enough to drive is correct – he cannot ride a bike (not because he’s not able) but because he can’t see other bicyclists or cars until they are right in front of him, when there’s not enough time to stop. He is learning to use a white cane, but like other teenagers, doesn’t like to be seen as different or disabled. His biggest wish is a “fix” for his vision loss like he has for his deafness. While a blind person often as acute hearing to enable them to be independent, a deaf-blind person does not have this benefit. Even with cochlear implants (Brendan received one in his other ear at age 5), his hearing is not good enough to use it to cross a street. While he still has central vision at this point, we know that it will continue to decrease as well. Brendan loves math and science and has wanted to be an astronaut since he was three. We hope that scientific research will make it possible to find a “fix” for his blindness so that he can go to college, get a job, and live independently as an adult.