Our son Ethan inspired us to create this charitable organization to help kids with Giant Axonal Neuropathy (GAN). When Ethan was 3 years old, we started to notice that he was a little different from other kids his age. He wasn’t running or jumping; in fact, he lost his balance frequently. He began to rely on a walker (which he affectionately named Wally).
Ethan Through The Years
After a few years of doctors’ appointments and many tests, Ethan was finally diagnosed with GAN at the age of 6. As the condition worsened, he gradually lost mobility and coordination. He started using a wheelchair at age 8, and required liquid thickener in order to be able to swallow liquids to prevent aspiration. Eventually he became dependent on a G-tube for some of his food and liquid intake.
Ethan was no stranger to doctor’s offices and hospitals throughout his childhood and early adolescence. He donated countless blood and skin samples to research facilities across the world. At age 10, he spent Christmas and Spring break in the ICU with a case of double pneumonia which, due to his already weakened immune system, sent him into septic shock (life-threatening infection). We almost lost Ethan that year, but he miraculously pulled through.
When Ethan was 15, he underwent spinal fusion surgery to correct his spine, which had become unnaturally curved (scoliosis) due to the progression of GAN. Soon afterward he was back in the hospital with a stage 4 pressure sore due to complications from the previous surgery, for which he had to undergo a second surgical procedure. While Ethan has recovered from both surgeries, he has become entirely dependent on his G-tube and can no longer eat or drink, even for pleasure.
If you were to meet Ethan, you’d never guess what he’s been through or the difficulties he faces daily. He’s more likely to charm you with his sparkling personality and optimistic spirit. No matter what’s going on in his life, he never fails to ask others how they’re doing. He’s made quite an impression on his fellow classmates at Riverside-Brookfield High School, where he’s involved in the Best Buddies program. One thing that GAN hasn’t taken from him is his ability to make an impact on the lives of others. Just by being himself, Ethan teaches everyone he meets about the power of love, gratitude, and hope. His positive attitude gives us the strength to keep going.
