The summer after Alex Shively turned 5 years old, his parents set a goal for him: Alex would learn to ride a bike.
Because Alex was diagnosed with a rare genetic disorder called Sotos syndrome, which is characterized by excessive physical growth, his parents figured his balance would be off and the project would take all summer.
They were wrong. Alex was riding his bike almost immediately, and bike rides have since become a favorite hobby the whole family can enjoy together.
On May 18, Alex and his mom, Deb Shively, plan to mount their bicycles together at Northridge High School and ride 20 miles in ADEC’s Ride-A-Bike fundraiser.
Ride-A-Bike is ADEC’s largest fundraiser each year. Thanks to corporate sponsors, every penny of every registration fee and donation goes directly to the programs at ADEC that serve individuals with intellectual and developmental disabilities like Alex.
This will be the first time the Shively family participates in Ride-A-Bike. Deb said they decided to take on the challenge as a way to stay active together, but also to help raise money for the day program Alex has come to love so much.
Alex has been attending Day Service at Goshen for five years, where he enjoys spending time with peers and learning new skills.
Jean Janc, a direct support professional with ADEC, described Alex as a social butterfly.
“He gravitates towards people, and it’s not always the same people,” she said.
And that is exactly what Deb wants for her son.
“As a parent, one thing that I can’t provide is a friend. At ADEC, Alex is surrounded by lots of good friends,” she said. “ADEC’s day program is a life saver. I don’t know what I would do if we didn’t have this option.”
Deb said ADEC has been there for her family since the beginning.
When Alex was just 3 months old, Deb had a suspicion that Alex was not developing typically. An EKG revealed abnormalities, and Alex was referred to a neurologist who had just learned about the rare Sotos syndrome that Alex was diagnosed with.
“God is just wondrous in that way,” Deb said. “It was hard at first, I blamed myself for a long time. You have to just let each person process that kind of news in their own way.”
Within months of a diagnosis, Alex was receiving therapies from ADEC to help him develop life and social skills.
“I was driving 70 miles three days a week,” Deb said of trying to fit Alex’s appointments into the already busy schedules for the family of 5. Deb worried initially about how Alex’s diagnosis would affect his siblings, but she soon realized it was their normal.
“It’s just a blessing now that I have grandkids,” she said. “They just accept Uncle Alex as he is and don’t have any preconceived notions.”
Deb said she is also grateful for the strong support network her family has built over the years in Elkhart County, through school, sports and church. That support network has already raised more than $600 for the Shively’s Ride-A-Bike team.
Interested in starting your own fundraiser or registering to ride? Sign up at adecinc.com/bike.