All Children's Hospital Telethon

Oliver

Oliver

Three-and-a-half year old Oliver already knows what he wants to be when he grows up.

Oliver

Not a policeman or firefighter.

He wants to be a "bone doctor."

He already knows how to put a cast on a leg. "At our house, Elmo gets them all the time," mom Kelly says with a wistful smile.

That's probably because Oliver has had more than his share of casts. His parents estimate Oliver has already had over twenty fractures of his legs - but honestly, they've stopped counting.

Oliver was born with OI - osteogenesis imperfecta - otherwise known as brittle bone disease. Without hard numbers, the National Institutes of Health can only estimate that between 20- and 50-thousand Americans have this rare genetic disorder. Oliver's orthopedic doctors at All Children's suspected OI before Oliver turned a year old. Delivered breech, Oliver was treated as an infant for a leg fracture by pediatric orthopedist Greg Hahn, MD. By the time he'd turned one and had three fractures, Dr. Hahn referred the family to genetics for OI testing.

Five days after the tests confirmed OI, Oliver broke his leg again. Just climbing out of his car seat the wrong way can result in another fracture.

"So far, legs are the only thing Oliver ever breaks," Kelly explains, noting that other OI kids they've met will suffer broken bones throughout their bodies. "I just think back before we knew the diagnosis to all the times he'd be on the changing table, crying. We'd lift him by the feet to clean his bottom, never knowing he probably had fractures even back then."

Though there is no cure for OI, treatment aims to prevent or control symptoms while optimizing bone density and growth. Oliver regularly spends the day in All Children's Infusion Center, receiving intravenous medication under the direction of pediatric nephrologist Sharon Perlman, MD. The drug aims to maximize bone density.

Oliver has also been through a process called "rodding." Pediatric orthopedic surgeon Scott Beck, MD operates to place thin metal devices called Fassier-Duval rods into the long bones of the legs. These telescoping rods run the length of the bone, "growing" in length as the child's bone grows. It's thought that the rods offer greater strength and stability, keeping the child's bones from curving as they grow due to repeated fractures. In January, Oliver had surgery at All Children's to place the last of four rods in his legs.

But that didn't sideline Oliver for long. Twice a week, he works with physical therapist Marijcke van deer Merwe at All Children's Eastlake Outpatient Center. And two afternoons each week, you'll find him in one of his favorite places - the pool at Clearwater's Long Center. Here, pediatric occupational therapist Lee Ann Tripepi and pediatric physical therapist Allyson Murphy can put Oliver through the paces, safely buoyed by the water against potential fractures. It's in the water, mom says, where Oliver usually makes the fastest progress.

No wonder, then, that Oliver's family treks from their Palm Harbor home to All Children's whenever he takes a serious tumble.

"I feel like we're blessed to have All Children's Hospital as close as it is," says mom, "lucky that the people here are open to discussing Oliver's care with experts nationwide who deal with OI. No one has all the answers when it comes to OI, but the people here at All Children's are interested in learning and willing to search for those answers."



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