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Posted on Tue, Nov. 10, 2009

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A mom fights MD

rland advocates for her son, others who have Duchenne muscular dystrophy

BY KAREN SHIDELER

The Wichita Eagle

Bev McFarland is not one to sit around. That's literally true: She started running back in her college days and still puts in four or five miles a day, "just enough to clear the lungs and clear the head."

And it's figuratively true: She is a passionate advocate for her older son, Ross, and other boys who have Duchenne muscular dystrophy.

Muscular dystrophy is a genetic disorder that causes progressive muscle wasting and weakness. Duchenne MD is the most lethal form and affects only boys. It can affect muscles as early as age 3. By his early teens, the boy's heart and respiratory muscles also may be affected.

Ross, now 14, was a toddler when his parents noticed that his development seemed to lag in some areas.

An early childhood screening resulted in a referral to Heartspring and a diagnosis of Asperger's syndrome, which is part of the autism spectrum. The McFarlands sought help but Ross' gross motor skills continued to lag. A physical therapist suggested he be evaluated by a neurologist.

Nearly a year after his first diagnosis, a simple blood test showed Ross had Duchenne muscular dystrophy.

It's common for a diagnosis to take that long, McFarland said. And even if a boy is diagnosed early, "there's nothing really that can be done, from the get-go."

After Ross' diagnosis, McFarland got involved with a group called Parent Project Muscular Dystrophy, a nonprofit organization that works to find treatments and a cure for Duchenne muscular dystrophy.

Parents have to advocate for their sons, she says, because "most of these kids are dead before they're old enough to advocate for themselves." The typical life expectancy is early 20s.

One of the organization's fundraising activities is Run for Our Sons.

McFarland, who'd completed a marathon in her younger days, took up training again. "I started doing a marathon a year to raise money," she says. Others joined her "but there's only so many of your friends you can ask to do a marathon."

Enter the Rosstoberfest Run.

It's a 5K run and a one-mile run-walk in College Hill that ends at Blessed Sacrament parish's Oktoberfest.

The first Rosstoberfest, in 2008, raised about $10,000, McFarland says. This year's was Oct. 3; she doesn't yet have a total from it.

Just as important to raising money, McFarland says, is getting the word out about muscular dystrophy. Too many young people don't know about it, never having watched the annual Jerry Lewis Labor Day telethons, she says.

Ross is "doing really well," McFarland says, and is still walking but has been fitted for a power wheelchair, which he'll need before much longer.

Ross is in a clinical trial for an experimental drug that shows promise for slowing muscular dystrophy's progression, though it can't reverse the damage already done. He takes steroids and heart medicine to counter the effects of muscular dystrophy.

Because of his Asperger's syndrome, Ross is "a one day at a time kind of kid." That's good, McFarland says: "We're just lucky that he's not asking a lot of the hard questions," nor is he asking, "Why me?"

McFarland handles her son's condition the same way, taking things one day at a time, adjusting to his needs and trying not to let them affect the way she treats her other two younger children — though that's impossible.

McFarland considers her family lucky for landing in Wichita after her husband, a radiologist, left the Navy to go into private practice.

"We've been very lucky," she says, to find all the services and schools here that Ross needs.

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