Steven and Cole’s story: Neurological disorders won’t stop these boys
One look at Steven’s smile is all it takes to know you’re in the presence of a very special young man. The same goes for his younger brother, Cole, with his vibrant personality and take-charge attitude. Diagnosed with an extremely rare neurological condition, these boys not only have each other—and their loving parents—for support, they also have a team of pediatric experts at Beacon they can rely on for outstanding care, close to home.
Taking on challenges, together.
“When I think of Steven…” his mom, Lori, says, “He is the most easy-going, laid back, funniest kid you can imagine. He makes everyone around him just want to be around him.” He exudes a spirit of joy that’s truly inspirational. And it’s no small wonder given that Steven is one of only 200 people worldwide diagnosed with ARSACS (Autosomal Recessive Spastic Ataxia of Charlevoix-Saguenay) — a progressive, genetic neurological disorder that stops messages from the brain that tell the muscles to work as they should.
The Hoese family first learned about ARSACS when Steven was around 18 months old. “He wouldn’t take steps independently,” Lori explains. “That was when his doctors knew there was something more they needed to investigate.” They believe Cole may also have ARSACS.
They were referred to Beacon when Steven was two years old and wouldn’t eat. “We got awesome results and started using Beacon for physical and occupational therapy,” explains Lori. “Steven is a really hard worker,” adds dad, Steve. “When he’s challenged to do things, he accepts the challenge.”
Today, the Beacon therapy team helps both boys have a better life. Through daily physical therapy, Steven’s brain can figure out ways to keep his body as stable as possible and compensate for weaknesses. For Cole, physical and occupational therapy help strengthen his core muscles and figure out ways to accomplish physical tasks in a ways that work for him.
“The boys support one another,” Lori says. “They’re always looking out for each other.” Together, they’re getting stronger, tackling the challenges of everyday activities most kids take for granted.
Ongoing support. Hope for the future.
“Beacon Children’s Hospital has helped us tremendously over the six years we have been attending. I can’t say, ‘thank you’ enough. Those therapists have such a bigger picture of where the boys can be—even bigger than Steve and I are sometimes able to envision,” Lori says. “And that is so helpful and encouraging.”
Help us care for more kids like Steven and Cole
Beacon pediatric specialists create a safe and welcoming space for children across the region. Our care teams are honored to provide compassionate care to children like Steven and Cole, close to home. Less time traveling for specialized pediatric treatment means more time doing what they love. Give now.
