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'How do you talk to a child about the fact that he might need a wheelchair?'

PORTLAND, Ore. - Shriner's Pediatric Hospital in Portland is one of multiple sites across the United States specializing in Muscular Dystrophy research.

Muscular Dystrophy is a rare disease, but when someone is diagnosed with it, it can make everyday tasks hard or even impossible to do. Once someone is affected, it moves quickly from the upper arms and legs, eventually making its way through all body parts including the heart and brain.

In the halls of Shriner's Pediatric Hospital, kids with Muscular Dystrophy run across the floor testing their motor skills.

Doctors and students meet in the morning and prepare for the day.

In attendance are specialists ranging from orthopedists to geneticists to physical and occupational therapists. Leading the pack is Dr. Erika Finanger.

"I've always known I wanted to work with kids," she said.

Dr. Finanger is an Oregon Native who's studied health science for more than two decades

"I've been doing this now for five years on my own and a lot of the kids I see now as my kids. Those are the kids I first met at diagnosis and it's a very different relationship and I feel it's harder now that I've been with the family and the kids from the beginning," she said.

Since the hospital in Portland specializes in M.D. research, they can distribute new drugs to children as soon as they receive them.

"Some families travel and they come because you're going to meet a group of physicians here and other medical staff that know a lot about your child's very rare condition," she said. "You get to see everybody in one day, you get to see whatever medical professionals you need to see, you get to see physical therapy and social work and everyone."

When patients arrive, it's hard work. Kids are tested for everything from speed improvement to upright sitting exercises. Sometimes the road to recovery isn't as easy as it sounds.

"I think part of it too is just knowing how do you talk to a child about the fact that he might need a wheelchair," Dr. Finanger said. "I always say if there was a way to cure them all and I was out of a job, great, it would be the best day in the world."

Until then, Dr. Finanger said she'll stay by her patients' sides for each step down this uneasy journey.

"It really is a journey, and you just kind of take it one step at a time, and knowing what the future is takes some of the fear out of the families. Doesn't make it better, but I think that's one of the things that helps the most," Dr. Finanger said.

The Muscular Dystrophy Association (MDA) is the world's leading agency dedicated to improving treatments and finding a cure for the disease. Through donations and grants, doctors are making progress towards their goals.




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