We first learned about Ty from one of our long-term friends Libby Campos. Libby is a special-education teacher at Northside High School here in Columbus, Georgia and Ty was one of her students. She had applied for help previously for other students in her class but was unsure if we could help Ty and his parents. She wanted to let us know Ty’s mom Amy had embarked on a fund-raiser to hopefully raise enough money to purchase a wheelchair-accessible van for Ty but Libby knew we were still a relatively new charity and were limited in funds. Nonetheless, Libby – never quit or give up on a challenge – wanted Pedaling for Kids to know about Ty.
Ty was a typical healthy child until the age of 10. He was a gregarious, hard-charging, always-smiling kid who loved sports. He especially loved soccer. But then something happened. Something just wasn’t right. After months of testing doctors informed Amy that Ty had Juvenile Huntington’s Chorea. Huntington’s Chorea (HC) is a neurodegenerative genetic disease that is quite rare – occurring in only 7 of 100,000 people. HC typically manifests its symptoms in middle-aged adults between the ages of 35 -45 years of age. Huntington’s is a devastating disease with no cure. Those with HC end up with very rigid spastic movements, are wheelchair bound, and need full-time care. The life expectancy in those diagnosed with HC averages 20 years from the time of diagnosis. Juvenile Huntington’s Chorea is even more rare than the typical HC; only 6 percent of HC occur before the age of 21. Juvenile HC has a more rapidly progressive deterioration than the Huntington’s starting in middle age.
Ty’s mother and stepfather Scott contacted Ty’s biological father after Ty was diagnosed with Juvenile Huntington’s to give him the terrible news. Ironically, Ty’s biological father had just been diagnosed with the adult form.
We first met Ty and his family in January of 2014. Ty was now 17 years old and his Juvenile Huntington’s had already taken a devastating toll on him. He was wheelchair-bound and had a gastric feeding tube in place because of his inability to swallow. Although 5 feet tall, Ty weighed only 90 pounds. His mother Amy had long since put her career as a respiratory therapist on hold to care for Ty full-time. Libby wanted us to make sure we met Ty and his family; she told us we wouldn’t believe how positive and wonderful they were. And she was absolutely right.
Our Board of Directors met immediately to see if we could help. Our community interaction up to that point had certainly been on a smaller scale financially. Scott, Amy, Ty and his younger brother Robert were meeting with our Board in less than a week – and we were blown away. We were not only amazed and inspired by their love and commitment to each other, but were moved by their ability to find positivity in all they encountered. Amy, weighing only 130 pounds herself, was struggling in transporting Ty. She not only had to fold Ty’s wheelchair to put it in their present vehicle, but she also had to physically lift Ty to put him in a car seat. It was not only difficult for Amy to get Ty into a car seat and secure him, but the entire process was a very painful one for Ty as he had become very rigid with the disease progression. It had become so painful to get Ty out of his wheelchair for the ride that Amy had taken on the project of raising money for a wheelchair-accessible conversion van on her own.
After our meeting with Ty and his family, our Board promptly voted unanimously to participate. We decided – with Scott and Amy’s consent – Pedaling for Kids would spend a larger amount of money in order to secure a newer, lower-mileage van. Although the amount to be spent was by far our largest commitment to date, we felt our donors and supporters would wholeheartedly approve how their money was allocated.
Within two weeks Ty and family had a beautiful, low mileage van that allowed Amy to load Ty – while still in his wheelchair – into the conversion van via the back door of the van. No more painful rides for Ty! And no more lifting and risking injury for Amy…
Very sadly, we lost Ty March 4, 2014. This incredible family however never ceased to be thankful and positive. And thru the loss, it was Amy and Scott who reminded the rest of their family and friends to rejoice in the happiness that Ty brought to them and to everyone else with whom Ty had ever met…