Patient Stories

Where There's a Will, There's a Way: Excelling with Osteogenesis Imperfecta

 

“I saw a wheelchair race in 1996 and I wanted to get involved,” recalled Wilfredo “Wil” Colon, age 46, a patient of Hospital for Special Surgery. “I just knew I could do it.”

And “do it” he did.

The ING New York City Marathon is host to one of the most competitive wheelchair marathons anywhere, featuring more than 200 wheelchair and hand cycle athletes each year, including a variety of ambulatory competitors with disabilities. 

In 2010, Mr. Colon entered the race.

Mr. Colon lives a full, active life with osteogenesis imperfecta (OI), a genetic disorder also known as "brittle bone disease" and characterized by bones that break easily, often with no apparent cause. A classification system for OI is used to help describe how severely a person is affected. An OI patient may have just a few or as many as several hundred fractures in a lifetime.

“I was hospitalized from birth to age 10,” says Mr. Colon, who is now the father of two and a grandfather. “My family was afraid, they didn’t understand the disease and did not know how to care for me—I learned to do everything on my own.” 

Although wheelchair bound with limited use of his lower extremities, Mr. Colon learned to care for himself and perform daily tasks with little to no assistance. Focusing on building upper body strength and mental toughness, Mr. Colon became involved in tai chi, martial arts, and has always made it a priority to stay physically fit. “In [and outside] of training, I would often break bones in my arms and legs,” said Mr. Colon. “Sometimes I would get it fixed or I would let it heal on its own.”

Allowing bones to heal without help, however, developed into a host of problems over the years, including deformed limbs. Eventually, Mr. Colon sought the expertise of Daniel Green, M.D., pediatric orthopedic surgeon at HSS.

“I have cared for Mr. Colon’s daughter, now a young adult with OI, for many years,” said Dr. Green. “Although my practice focuses on children, I believe Mr. Colon saw success in her progress and thought I could help him too.” 

Dr. Green with Wilfredo "Wil" Colon

Mr. Colon received the comprehensive care he needed from Dr. Green and HSS. Over the past two years, Mr. Colon has undergone three surgeries to correct deformities in his legs. Recently, about six months before the 2010 NYC marathon, Mr. Colon broke his arm - twice. Dr. Green performed two surgeries to fix the breaks.  

"It was suggested that I reduce my training and sit the marathon out,” said Mr. Colon with a smile and shrug. “But I’m a man of determination - I wasn’t going to let a bad break stop me.”

On Nov. 7, 2010, Mr. Colon crossed the finish line of the NYC marathon to receive a third place medal, one of nearly a dozen medals and awards he has received in 15 years of wheelchair racing competition.

“I owe a great deal to my faith and Dr. Green for allowing me to continue to live life with possibility,” he continued. “Like my family and friends always say - where there’s ‘Wil,’ there’s a way.”

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