Josh Winheld, 31; wrote about his muscular disease

Posted: December 07, 2009

Last month, Josh Winheld made the final revisions to his master's thesis on handicapped accessibility, a subject he began researching at age 10, when Duchenne muscular dystrophy forced him into a wheelchair.

"With a deadline looming and on the verge of exhaustion, nothing was going to stop me," he wrote on his blog. "If only for a moment, I was able to recapture some of my old magic, pushing myself every time I wanted to take a break. Just after midnight, I submitted my paper."

It was a final herculean achievement in a short life that, by all accounts, was defined by accomplishment, grit, and wit.

Mr. Winheld, who was 31, died Saturday at Elkins Park Hospital from complications of muscular dystrophy.

He was diagnosed with the genetic disease at age 4. Although it starts with general muscle weakness, it progressively destroys all the muscles, including those that control the heart and breathing.

"When he was diagnosed, these kids didn't live past adolescence," his father, Michael Winheld, said from the family's Cheltenham home. "So we had some extra time with him."

Michael and Linda Winheld insisted that their son have as normal a life as possible - and he thrived on the challenge. He attended regular public school classes, went to his senior prom, and fed his baseball fever with trips to Chicago's Wrigley Field and the Phillies' spring training complex in Clearwater, Fla., among other places.

His sister, Stephanie, 21, said that as a child, she assumed "every family had someone in a wheelchair."

"When I was about 5, Josh would come pick me up at school in his wheelchair," she said. "I thought that was normal."

As his disease progressed, he required constant nursing care, spinal fusion surgery, and an implanted heart defibrillator. Seven years ago, he became dependent on a ventilator.

None of it daunted him. At Temple University - from which he graduated with honors and a journalism degree - he quickly made friends, including Kristen Graham, now an Inquirer reporter.

"I met Josh on my first day of Temple University in 1996, and he became one of my closest friends," she recalled. "He was a gifted writer and the strongest person I've ever met. His life was of course profoundly affected by the disease, but he was not defined by it."

His blog, called "Winheld's World: My life with Duchenne muscular dystrophy," is conspicuously devoid of self-pity or even complaints.

Last year, after his fifth annual guest lecture before medical students at the University of Pennsylvania, he wrote: "It helped that my voice was very strong today. But what helped even more was that the students asked excellent questions. As a speaker, this showed me that they were interested, but as a patient, it showed me that [they] . . . will join the ranks of medical professionals who 'get it.' "

To help doctors "get it" - and to buoy other patients and their families - Mr. Winheld finished his autobiography, titled Worth the Ride, published by Little Treasure Books. All 75,000 words were painstakingly typed using a special hands-free computer that he controlled with head movements.

He donated the profits to Parent Project Muscular Dystrophy, a nonprofit organization focused on advocacy and funding research.

"Readers of his book, and his blog, said that Josh's full life, keen mind, and accomplishments made them hopeful for their own futures," Graham said.

Mr. Winheld's funeral will be at 11 a.m. tomorrow at Reform Congregation Keneseth Israel, 8339 Old York Rd., Elkins Park, 19027. Donations may be made to Parent Project Muscular Dystrophy, 158 Linwood Plaza, Suite 220, Ft. Lee, N.J., 07024. (www.parentprojectmd.org)

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