2016 #MyGivingStory Award Winner
By Elaine Cinkay
In 2014, I met a young boy named Ethan. My daughter was spending the day with him and I was introduced to his parents. After speaking for some time, I learned that at the age of 6, Ethan was diagnosed with an extremely rare and terminal disease called GAN. GAN (Giant Axonal Neuropathy) is an inherited condition that involves the dysfunction of protein in nerve cells. Children affected gradually lose the use of their limbs and eventually rely on ventilators and feeding tubes. The diagnosis forced his parents to take on the task that no parent should ever have to...find a way to save their son.
In 2012, Ethan's parents began a foundation for their son to raise money and awareness about GAN, as well as assist other families in providing a better quality of life for their children. GAN is so rare that to date there are only 73 children worldwide who have been diagnosed. My heart ached thinking about the struggles they had already endured and knowing what the future held. I knew I couldn't leave without asking how I could help. She informed me that they were in the process of having their 2nd annual fundraising event, and wondered if I would be interested in joining their committee. Without hesitation, I agreed.
Serving on the board for All in for Ethan has given me the opportunity to witness firsthand how children and their families have benefited from donations. The money raised thus far has been used to provide medical supplies, food, and other amenities directly to families across the U.S. whose children are stricken with the disease, but who lack the means in obtaining necessary supplies. There is such a small community of GAN patients and families that are spread out all over the world. It has been a necessity to utilize the internet and social media to not only spread awareness of the disease but to act as first responders for newly diagnosed children. Last year, a donation of $20,000 was given to Dr. Steven Gray of the University of North Carolina. His groundbreaking research has put GAN on the map and has led to clinical trials that are currently underway at the National Institute of Health.
The bond that I have formed with Ethan and his family is stronger than most familial ones. The other day I called Ethan and this was our brief exchange:
"How was your day, are you feeling OK?"
"No, not really... What's wrong?"
"I don't feel OK, I feel perfect"
Currently, Ethan is confined to a wheelchair and has limited use of his hands. His speech is slow and labored, however, the words that emerge from his mouth are profound. Perfect. This is who Ethan is. Who he is not, is a victim of the disease. Ethan has never let his physical limitations define him, and when you are in his presence, it's hard to remember he has them. What is apparent is his desire to express love. It's a guarantee that the moment you meet him, you will be greeted with a tight embrace, followed by a peck on the cheek, and an indelible mark left on your heart.
I am All in for Ethan. I carry his optimism with me daily and hope that his words and fight will inspire everyone to answer "Perfect," when asked how they are feeling.
Written in support of All in for Ethan