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Blog in Your Ear

Elijah’s Story

At the age of 3, Elijah was diagnosed with a rare kidney disease called Alport syndrome.  This genetic mutation of his collagen means that Elijah’s kidneys cannot properly filter his blood, and as a result of the mutation, his hearing is affected.

At the age of 7, Elijah’s gradual hearing loss had significantly changed enough to warrant hearing assistance.  His dad had noticed how Elijah kept turning the volume up on the TV, and he would not hear his parents talking to him unless he was looking at them.

When Elijah received his first set of hearing aids he remembers how loud the sounds were for the first month – sounds in the lunchroom at school, sound of the road, his triplet cousins crying.  Elijah said, “I never knew I wasn’t hearing well.  (Hearing aids) were eye opening.  I thought the sound I was hearing was normal.”

When asked what his favorite sounds are now that he is hearing more clearly, Elijah says he really likes hearing nature – birds, crickets at night.

Elijah is like an encyclopedia on the subjects of Alport syndrome and hearing loss.  Now at 13 years old, he has been researching his disease for years and, with support from his parents, he is part of a medical study in Minnesota.  Because of the positive interactions with his audiologists at school and at Constance Brown Hearing Centers, Elijah wants to pursue a career in audiology.  He is well on his way to achieving this.  In the 4th grade, he presented a career speech on audiology and he won 2nd place.  In 5th grade, he gave a speech on his hero, Alexander Graham Bell, whose experimentation with listening devices led to his invention of the telephone.  Elijah placed as a runner up.

Elijah says he will not let his disability be an excuse to not live life, and he will not let hearing loss make him miss out on all there is to hear.  Every morning, he is more than proud to put on his hearing aids.  By all accounts, Elijah is an exceptional young man who is doing his best to live a normal life.  He loves art and plays football, has a lot of supportive friends and family, and he is grateful for the help he receives from his audiologists.

He comments that his audiologist at Constance Brown Hearing Centers is open to everything.  “She wants to discuss any questions I have.”  Elijah’s mom says everyone from the Receptionist, Audiologist and Billers are so approachable; the staff is not intimidating – they are more like family!  There is a genuine caring attitude, and Elijah feels comfortable talking to his audiologist.  Seeing Elijah grow up over the years makes him like family to us as well.

When asked about advice he’d offer people with normal hearing, Elijah said, “When I hear music in people’s cars so loud that I can FEEL it, it’s hard to imagine that they could ruin their perfectly good hearing.  Even when you tell someone how bad it is to listen to music too loud they don’t seem to care.  If they only knew how much it would mean to any of us that have hearing loss, would they take their hearing for granted?  We miss the sounds of nature, the sounds of crickets and birds.  We miss the sounds of people talking to us – especially in a noisy room.  How can listening to music be so important that you would ruin your perfectly good hearing?

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Posted in: Children, Communication, Hearing Aids, Hearing Health, Life Style

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