The Muscular Dystrophy Association’s Labor Day Telethon has become an annual tradition, sharing stories of people throughout the U.S. living with a variety of neuromuscular conditions. Watch the telethon this year – it airs on Sunday, Sept. 4 from 6 p.m. to midnight – and you’ll see an inspiring story from right here in Minnesota. Jayson Tibbets, 17, of Plymouth, was diagnosed at age 3 with Becker Muscular Dystrophy, a genetic disorder characterized by progressive muscle weakness. He’s been a patient at Gillette Children’s Specialty Healthcare since childhood, where he receives a variety of services through the hospital’s Neuromuscular Clinic.
Because Gillette’s Neuromuscular Clinic partners with the Muscular Dystrophy Association, Jayson and his family receive support from both organizations. “All parents have questions about their child, but I have even more,” says Jayson’s mother, Lynn Tibbets. That, she says, is where the partnership is especially helpful. “Gillette and the MDA come in with a plan in place to overcome our obstacles. And if there isn’t an answer, they’ll figure one out.”
With Jayson now nearing college age, the family has come to appreciate Gillette’s transition services, as well. Because most disabilities—including muscular dystrophy—can’t be cured, Gillette offers transition assistance to people who, like Jayson, are approaching adulthood. Jayson, for example, recently began receiving services at Gillette Lifetime Specialty Healthcare, our clinic for adults. Not only can Jayson receive age-appropriate care needed to maintain his independence, but he can also practice important life skills he’ll someday need. For example, the MDA Telethon’s video crew recently followed Jayson while practicing with handicap accessible kitchen appliances in the Lifetime Clinic’s adaptive kitchen.
“Jayson’s positive attitude and determination has helped him remain focused on what he can accomplish, not on his limitations,” says Jason Kelecic, director of Gillette’s Neuromuscular Clinic. “As Jayson makes plans for the years ahead, Gillette and the MDA will continue working together to help him achieve his goals.”
The Tibbets say their goal in sharing Jayson’s story is simple: finding a cure. “I tell the MDA that my job is to help beat this thing,” says Lynn. “I like to say that it’s my business to put them out of business.” Jayson agrees—and continues to inspire both Gillette and MDA staff with his positive approach to life. “Just because you have a disease doesn’t mean you have everything taken away from you,” says Jayson. “I have limits, but I can still do lots of things.”