Hear Tyler's story,
as featured on KS95 For Kids.
When Tyler fell off his trike at age 2, breaking his arm, his parents found it unusual. "It wasn't a major fall, so I was surprised by the break," says his dad, Chris. Doctors told them not to worry. But one year later, Tyler broke both of his arms within a week. "At that point we knew something was very, very wrong," Chris explains.
What's Wrong With Tyler?
Tyler's worried parents brought him to Gillette Children's Specialty Healthcare and Ann Van Heest, M.D., a pediatric orthopaedic surgeon who specializes in the upper extremities. "Dr. Van Heest knew immediately that something wasn't right," says Chris. Genetic testing revealed a startling diagnosis: osteogenesis imperfecta (OI), a rare bone disorder often referred to as brittle bone disease.
Tyler, now 9, has since broken more than 20 bones in his arms, feet, spine, and other areas. He sees 10 specialists at Gillette, where experimental treatments have helped reduce his fracture rate. Implanted pins and screws, along with rehabilitation therapy, help to strengthen his growing bones.
But equally important as his treatment, says Tyler's mom, Alison, is the environment Gillette creates for her son. "I'm impressed by the comfort Tyler feels," she says of Gillette. "He'll check himself in, chat with registration staff, and walk around like he owns the place."
Collaboration Across the Globe
In an interesting coincidence, help for Tyler comes not only from Gillette, but also from more than 10,000 miles away in Australia. Tyler has yearly check-ups in Sydney, where his family is originally from, and several of his Gillette specialists keep in contact with Australian physicians to ensure they're up-to-date on Tyler's care and treatments.
"We're a global family, and we've taken a similar approach to Tyler's condition," explains Chris. "As a result, he's receiving exceptional care both at Gillette and from doctors half a world away."
"We Never Know When the Next Break Will Be"
Chris and Alison acknowledge the feelings of helplessness and unpredictability that come with Tyler's condition. "Whether he trips on the rug or falls on the playground, we never know when the next break will be," Alison says. In fact, Tyler has broken bones after tripping over the family's cat - and even while playing under the Christmas tree!
Despite their fears, his parents make sure their son has the same opportunities that every other child has. "We've learned so much from Tyler about tolerance, resiliency, and attitude," says Chris. "He knows he's a kid first and a person with OI second - not the other way around."
