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Deafblind Awareness Week – Lucas’ Story

Newborn baby with cleft palette Toddler boy with glasses plays with a toy Young boy with glasses plays with corn Young boy with glasses toddler boy with glasses

When Lucas was born we were expecting a baby girl. We got a surprise little boy! I right away noticed his facial palsy and deformed ears. After failing his newborn hearing test we knew something wasn’t right. After lots of tests and doctors visits we finally got to get some answers! After a long wait following DNA testing and coming out positive with CHARGE syndrome his specialist list got bigger!

Lucas receives OT, PT, and Speech Therapy. With a severe developmental delay and deafblindness it’s hard to even see progress but, Lucas can hear a lot better thanks to his BAHA hearing aid and see more clearly, even with colobomas in both eyes, with glasses on. He has been learning a lot thanks to therapy and of course Ms.Rachael! He has been hitting milestones a lot slower, but we for sure have come a long way!

What would you like to tell other people about deafblindness?

Deafblindness comes in different kinds of scenarios and people that don’t know someone with this disability might have no idea that there are different ranges in both blindness and deafness. Just because you might see a person with glasses or with a hearing aid doesn’t mean they are not blind or deaf. It’s hard to explain to everyone what condition our son has but Dad, sister, and mom love educating and explaining Lucas’ condition to others!