13 CARES: Competing For Cures
A lot of people compete in a lot of different events, for a lot of different reasons. Nora Wiseman runs and swims and bikes for others. “That basically means I go around bugging my neighbors, co-workers, family, friends for donations,” she says with a laugh.
The American Lung Association, firefighters and their families, kids in Africa. She’s bugging her neighbors to help more than half dozen non-profits, and she’s also helping herself. A year and a half ago, Nora wasn’t running. She couldn’t even walk.
“On January 6, 2011 I was in a car accident. I was ear-ended by a semi and it took paramedics an hour to get me out of the vehicle because the damage was so extensive,” she explains. “I was very bitter. I was mad that I was a healthy 20-something woman, getting my education and everything was taken away from me in that moment…. my independence, my health….”
Nora’s life changed in an instant. Lincoln Wheelock’s is changing much more slowly. “The clock is ticking down and it will hit zero,” says his mom Trisha, “he will lose his mobility and be in a wheelchair. It’s inevitable if we don’t find a cure.”
Lincoln has one of the rarest pediatric diseases on the planet – Fibrodysplasia Ossificans Progressive or FOP. Trisha and Lee Wheelock first heard the term in 2009, after spending two years trying to figure out what made their first-born son different from other babies and toddlers.
“The doctor had a grave expression,” Trisha remembers, “she was very serious and compassionate because she said – this is a terrible, cruel disease.” Lee adds, “It was nice to finally know what it was but also very frightening to know that it was extremely rare and kind of off the medical radar and there’s no cure, no medication, and they know very little about the condition. It was scary.”
He looks like a carefree little boy – but if you really watch Lincoln play, you’ll notice he doesn’t move with the same freedom as his little brother Hudson. It’s because FOP causes ligaments, muscles and tendons to turn into bone when damaged. It means bumps and bruises that are “normal” for most kids are anything but for Lincoln.
“He can’t play soccer, he can’t go out for baseball, he can’t run and jump on concrete, and he can’t go to the playground and be wild and crazy, “explains Trisha. “It’s sad to watch the first steps of that starting,” says Lee, “we know it’s a long road, but it’s starting and that’s hard to see.”
Lincoln is slowly becoming a prisoner in his own body. As he loses his ability to move, Nora is regaining hers. “It took me awhile to realize I was fortunate and I was being selfish and mad about what was happening to me,” she says, “I decided to stop having a pity party for myself and started realizing that so much good can come out of it and if I can help one person or help fund research that can save lives, then any pain I endured would be worth it.”
That’s what Lincoln’s parents are counting on. “In the back of our minds we cling to… we’re not going to have full-fledged FOP, we’re not going to have full immobility and if research continues maybe we can wind the clock back as well. There’s a promise of hope – that’s what we cling to.”