This is my daughter Jamie. She was born with a birth defect of her hearing called Large Vestibular Aqueduct Syndrome. In LVAS, the tiny hair-like follicles that bring sound waves to your brain are too far away from each other and can’t touch to bring sound to where it needs to go. She has been wearing hearing aids since she was a toddler, but you would never know she is deaf as she has done amazing things in her life.
Her biggest accomplishment in life has been learning, playing, and singing music, which is a huge part of her life. She is also an excellent lip reader and even in crowded, loud spaces can function. Unfortunately, the hearing loss can be progressive and hearing can continue to worsen, which is what she is dealing with currently. Her level of hearing is moderate to severe in the right ear with hearing aids and severe to profound in the left ear with hearing aids. Hearing aids don’t last forever, and every few years the technology gets better and better.
We have been fortunate enough to have had assistance in the past through state insurance until she was 18 and then health insurance which had once per lifetime coverage. She is now 27 and has grown out of her parents’ insurance. She works full-time but does not currently have health insurance benefits. Jamie is having a hard time hearing on the phone or in a crowd of people or even when speaking to her when her back is to you. Most of her job is speaking to people on the phone, so having the correct hearing aids is important, as well as keeping up her hobby of playing music and just being able to hang out with friends and be a part of the conversation.
With the type of hearing loss she has, she needs to wear over-the-ear hearing aids, and the average price is $3000-$3500 each. We are hoping to collect enough to get her a new pair which will help her to hear her best.
