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Patient Stories

Ava Approaches Rare Bone Disorder with Bravery

“Yay! It’s surgery day!” exclaims Ava to her mom, Ashley Huberty, each time she heads to the operating room at Gillette Children’s. Why does Ava so eagerly anticipate her surgeries? Although she enjoys the crafts, nighttime activities and the surprise of a new toy, Huberty explains the more serious reason for her daughter’s excitement: “She knows it fixes her pain.”

Ava has a rare orthopedic condition called multiple hereditary exostosis, which causes boney tumors to grow throughout her body. The tumors, though benign, must be surgically removed to prevent discomfort and permanent bone deformities, such as limb length discrepancies and limited joint movement.

At 9 years old, Ava has already undergone 10 surgeries. She’ll likely need surgeries every year until she reaches maturity. But the process is made easier, says Huberty, by Ava’s orthopedic surgeon, Stephen England, MD. “He listens to our concerns and genuinely cares. I can call with a question—even on the weekend—and he’ll get back to us right away.”

Because Ava often goes to school wearing one or more casts, she’s developed a straightforward explanation for her classmates. “I just tell them I have a bone disorder. That I grow extra bones and my doctor takes them off.”

When Ava isn’t recovering from frequent surgeries, she loves creating dance routines and planting her garden. And when surgery becomes necessary she counts on her beloved cat, Charlie, to comfort her. “Charlie likes to lay by me after my surgeries,” says Ava. “He helps me feel better and knows not to touch the places that hurt.”

Huberty, who has the same genetic condition as her daughter, says Ava approaches it with more positivity than she did as a child. “Ava never asks ‘Why me?’ This condition can be rough and even painful, but she handles everything with bravery and happiness.”