In April 2001, then-9-year-old Whitney was diagnosed with fibrodysplasia ossifcans progressiva (FOP), a rare genetic disorder characterized by the abnormal growth of bone in soft tissue. In cases of FOP, muscles, tissues and ligaments actually develop into bone, progressively immobilizing the patient.
In March 2011, as Whitney was getting ready to enter Georgetown University in the fall, she and her parents, Bill and Hilary Weldon of New Vernon, visited Matheny. Whitney’s mobility was extremely limited, but she was not able to use a conventional wheelchair. She and her parents were hoping therapists and rehab technicians could evaluate her for adaptive equipment that would make her adjustment to college easier.
Matheny recommended the Permobil C500, a front wheel-drive power wheelchair with a standing feature. “This model allows the seating system to come up to meet her,” according to Jon DaSilva, Matheny rehab technician. “And we added custom foam in places to help with her comfort level.”
At first resistant to using a wheelchair, Whitney has since grown to embrace it. “I’m doing great,” she says. “I can get around faster than if I were on foot, and I have the freedom to get out of it if I want to.” Some of her early reluctance, she admits, was because she worried it would be a deterrent to meeting new people. But the wheelchair, she says, has actually contributed to the fun of the college experience: “I can get places quicker. People don’t have to wait for me. I have to wait for them now.”
Permobil, based in Lebanon, TN, develops, manufactures and markets power wheelchairs and transport and communication systems for people with functional disabilities. DaSilva says Stephen Burke, Permobil’s representative in northern New Jersey, “has been a huge resource for us, not just with Whitney but with other clients as well.” Whitney appreciates that Matheny has given her a Permobil contact in the Washington, DC area. “If I have a problem now,” she says, “they will send someone to make any adjustment I need.”
While Permobil can be a huge boon for FOP victims, there remains a tremendous need for research funding for the disease. The Weldon family, through the Weldon FOP Research Fund, has raised awareness and millions of dollars for the FOP Laboratory at the University of Pennsylvania School of Medicine. To learn more, visit the Weldon Fund.