We adopted Ethan when he was 3 days-old. At age 3, we knew there was something wrong with Ethan because he wasn’t running or jumping like his peers. He had balance issues, tripped, and fell a lot. It took a couple of years of endless doctor’s appointments and tests to finally get an official diagnosis of Giant Axonal Neuropathy (GAN) at the age of 6.
Ethan used a walker for about a year before his legs could no longer hold him up and then moved to a power wheelchair at age 7.
Every single nerve cell in Ethan’s body is defective and it’s just a matter of time before catastrophic failure occurs. It’s hard to wrap your head around what this all involves as the nervous system controls everything we do, including breathing, walking, thinking and feeling.
GAN has already robbed Ethan of so many things like the ability to walk, eat food, use his hands, sit-up by himself. It has compromised his immune system, made his lungs weak, uses a g-tube for feeding, losing the ability to use his hands, has glaucoma, and has white matter growing in his brain. This doesn’t even include all the experiences he misses out on like hanging out with friends, riding a bicycle, sleepovers, camping trips, or playing sports he never had a chance to play.
While our friends are celebrating their children’s accomplishments and independence, sending them off to college and hoping for grandchildren my husband and I are trying to plan and prepare ourselves for all the health issues coming our way as GAN devastates Ethan’s body. To keep him in a relatively speaking “healthy” state, many preventative measures must be followed. As the disease progresses the costs to take care of Ethan also increase. His regular routine consists of weekly visits to Physical, Occupational, Myofascial, and Respiratory therapists as well as visits to over 5 medical specialists. Medical equipment also is necessary and plays an important role in maintaining his wellness.
To look and speak to Ethan you would never, ever, know that he fights just to exist every day. Despite his battle he shows the world a different picture, a young teenager full of promise, always positive and full of kindness. Ethan is a teacher to all those he encounters because he has changes the way they think about their lives and teaches them to be grateful for it. John and I have learned about the profoundness of love because of Ethan. We do what we do for him because he is our hero and mentor.
We are so thankful to Cameron Can in selecting us to be one of its beneficiaries this year! Ethan has had 2 major surgeries this year and many unforeseen medical expenses. We sincerely thank all of Cameron Can’s donors who so generously give to help others like our family.
Sincerely,
Gelse and John Tkalec