Condition: Mohr Tranebjaerg Syndrome
City, State: Sherwood, OR
Club: Sherwood Middle School Sparrow Club Service Hours:
Date Adopted: 1/21/2021
Noah's Story:Noah is a sweet 7-year-old who is full of energy and extremely loving. He loves to ride his scooter, bicycle, and jump on the trampoline. He also loves to build things with Legos and play with remote control cars.
Everything was fine up until Noah was about three and a half years old and his parents noticed some speech delay. At the age of four, doctors initially placed tubes in his ears, hoping that would improve his speech.
Noah had multiple hearing tests by several Audiologists, which he passed. His parents still felt Noah was not able to hear properly so they moved forward with a test under sedation that detected if Noah’s brain measured sound, which he failed. He was diagnosed with auditory neuropathy. This means his ears detect sound, but the sounds get scrambled by the time they reach the brain and he only hears static.
In November 2018, Noah received the first of two Cochlear implants. Then, in January 2019 doctors discovered he had a rare neurodegenerative disease called Mohr Tranebjaerg Syndrome.
There currently is no cure for this disease and it involves maintenance only. Noah takes daily medications. He will experience hearing loss, dystonia (extreme tightening of the muscles), possible eyesight loss and behavioral challenges.
Noah relies on reading lips and people speaking slowly, so this will be a challenge. He is attending a special school designed for students with hearing loss. This school provides him Teacher of the Deaf and Auditory Verbal Therapy support.
Noah is a true warrior who is learning to overcome obstacles, but he continues to be loving and compassionate of everyone he meets.
Noah will be adopted as a Sparrow to Sherwood Middle School. Students will work hard to not only love and support him, but also raise money for Noah through sponsored community service for his medical and educational needs.