Faces of Rare Disease: Duchenne Muscular Dystrophy

Faces of Rare Disease: Duchenne Muscular Dystrophy

There is a deadly and fast-moving form of muscular dystrophy that affects one in every 3,600 male infants.

The outlook is grim, with most young men never reaching the age of 25. In this "Faces of Rare Disease," 19-year-old Ross Grimball talks about living with the terminal illness, Duchenne muscular dystrophy.

Don't let Ross' wheelchair mislead you about just how capable the young man operating it actually is. "Duchenne muscular dystrophy only affects your muscles," he said, "your brain still functions just like everyone else."

Ross lives in Patterson, near Morgan City. He is bright, funny and full of life. But a diagnosis of Duchenne muscular dystrophy is now challenging all aspects of daily living. "You pretty much become a prisoner in your own body," he said, "you're not able to move your arms, you can't walk."

To understand this disorder, we need to rewind to Ross as a toddler, when his parents, Keith and Michelle, knew something was off - even in watching him stand. "He had to use his hands on his knees and he climbed his legs with his hands to a standing position," said Michelle.

That is a common move that young boys with Duchenne will make.

After seeing multiple therapists and specialists, Ross underwent DNA testing at age three and tested positive for Duchenne muscular dystrophy, a paralyzing disorder that only had a life expectancy of 18 years. "You keep fast-forwarding to 18," said Michelle, "18 years is not a long time so you keep fast-forwarding to that time."

Doctors explained that it was a defective gene for "dystrophin," a muscle protein, that caused the disorder. It is passed down from a carrier female to a male, that causes muscle weakness around age six, wheelchair dependence around age 12 and breathing difficulties and heart disease around age 20. Those are conditions Ross has accepted with a positive attitude. "Since I've gotten older," said Ross, "I don't even feel like I'm disabled, I've just accepted it and I don't feel like I'm any different."

While Ross faces physical challenges, mentally he does not miss a beat. At Patterson High School he graduated with honors at a GPA of 3.7. "Graduation from high school was big for me as a dad," said Keith, "because when he was diagnosed, I didn't know if he'd be here."

That thought, about this temporary life, is a constant for these parents. "It's in my mind any day that he just might not be here," said Keith.

"We have to give Ross the best life we can," said Michelle, "so we have to stop the crying and live one day at a time."

Those days are filled with joy. While Ross can only move his thumb, he is able to type with it, read books online, play games, even bowl in a league.

This young man says life is what you make it and even if his has a shorter expiration, it is worth living. "Life is what you make it," said Ross, "if you want a good life you just live it."

Ross currently takes medication for his heart and does breathing treatments with a percussion vest twice a day. His sister, Bridgette who is 24 years old, also found out she is a carrier for Duchenne muscular dystrophy, which means there is a 50-50 chance of passing on the disorder if she has a baby boy. She has one child, a little girl.

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