Hampton Bays Boy Suffering From 'Brittle Bone Disease' Tells His Story In Washington, D.C.

The Southampton Press—March 23, 2011   

On March 18, 2005, Ismael Vega was born at Stony Brook University Medical Center, tipping the scales at a healthy 6.9 pounds and was 17 inches long. Five months later, biopsy results uncovered a brutal reality.

For the rest of his life, Ismael will suffer from osteogenesis imperfecta, or OI, a rare genetic disorder characterized by fragile bones that break easily—also known as “brittle bone disease”—that affects between 25,000 and 50,000 Americans.

“No cure. No hopes. No future,” Ms. Vega said. “That’s what the doctors said.”

They were only partially correct.

While there is still no cure, doctors never predicted that Ismael’s battle with OI would lead him into an operating room twice in less than three years, and then on to Washington, D.C. The 6-year-old returned from the nation’s capital last week after telling his story to members of Congress, advocating for musculoskeletal research funding with his mother and Dr. Daniel Green, his pediatric orthopedic surgeon.

Doctors said Ismael would spend his life in a wheelchair, unable to walk. It was an undeniable future—that is, until the Vega family met Dr. Green, a pediatric orthopedic surgeon at Hospital for Special Surgery in Manhattan.

Read the full story and view photos at 27east.com.