Beautifully Different – Haylie
A Project Celebrating Differences and Triumphs
Haylie is Beautifully Different
Meet Haylie! Haylie is a sweet, energetic, amazing little girl, who has Pendred Syndrome. Pendred Syndrome is a rare genetic disorder characterized by severe to sensorineural hearing impairment and a malformation of certain bones in the inner ear. Pendred syndrome is a result of a defect in the production of the thyroid hormone, which controls the metabolism and helps regulate body growth. Haylie’s hearing declined after birth, but she was not officially diagnosed until she was 2. Haylie is Beautifully Different!
Though Haylie wasn’t diagnosed with Pendred Syndrome until she was two, it all really began at birth. In the hospital, all newborns are given a hearing test, Haylie did not pass hers. Through many tests and sedated Auditory brainstem response tests she was finally diagnosed at 2 years old with bilateral sensineural hearing loss. Her hearing started getting progressively worse in a short period of time so her parents opted to get an MRI done which showed Haylie has enlarged vestibular aqueducts which cause balance issues. They decided to do genetic testing and she also came back positive for Pendred Syndrome which causes hearing loss and thyroid problems. For the past year Haylie has seen many doctors and things have popped up through the year that just get added to the list of what makes Haylie-Haylie!
A typical day for Haylie
Haylie has to wear hearing aides in both ears. Her communication and speech are not like other typical children her age. She goes to speech therapy and she works hard everyday with using words or sign language. Haylie has so much energy she can do laps around others her age! She is very active and loves water activities, she can be at the playground running around for hours to burn off some energy and still be energized!
Fearless. Energetic. Happy.
Haylie is such a happy child, very friendly towards others and is a great little helper! She loves making new friends! Also, she finally has started to leave her hearing aides in a few months ago and started wearing charms on them. (cute little butterflies!) She is little miss independent. Haylie handles all of her therapies like a champ! She reads lips, which is very helpful for her communication! Haylie is an amazing and inspirational little lady!