Glen Burnie woman rides through adversity to strength

Hand cycling brings direction for Lauren Williams as she lives with a degenerative nerve disorder

  • Lauren Williams of Glen Burnie hand cycles as a way to stay active and fit as she deals with the effects of Friedereich's ataxia, a rare b neuromuscular disorder.
Lauren Williams of Glen Burnie hand cycles as a way to stay active… (Baltimore Sun photo by Lloyd…)
April 25, 2013|By Jonathan Pitts, The Baltimore Sun

Lauren Williams and her father unbox the treasure: a three-wheeled cycle, powered by the arms.

Larry Williams adjusts the footrests and affixes Lauren's feet with Velcro straps. Lauren, 26, narrows her eyes in determination, pushes one pedal with her right hand, the other with her left, and rolls away at a good clip.

Her father, a baseball coach, watches her go.

"If I had a team full of players like her, I could own the world," he says.

For other young adults, a new bicycle might mean an opportunity to shed pounds, travel sustainably or just get out in the elements more often.

For Lauren Williams, who won the $4,000 hand cycle in an essay contest, it's a chance to do things she could otherwise never dream of.

The Glen Burnie woman has Friedereich's ataxia, a rare but severe neuromuscular disorder that causes progressive degeneration of nerve and muscle tissue.

Over the past 17 years, it has robbed her of normal coordination in her limbs, slowed her speech, distorted her spine and placed her in a wheelchair most of her waking life.

Friedereich's ataxia affects about 20,000 people in Europe and North America. There is no known cure.

"When I look at everything that's happened since I was diagnosed, then try to picture what's going to happen from now on, it can be a little scary," Williams says.

For now, she says, she's focusing on what she can do, not what she can't.

Onset

Lauren Williams was an active child. It runs in the family.

Larry, a former minor-league infielder in the Pittsburgh Pirates system, runs BATT Academy, a baseball training site in Glen Burnie. Lauren's older brother, Anthony, is head baseball coach at the University of Pittsburgh at Greensburg. One grandfather, a World War II combat veteran, became a champion marathoner in his 60s and still runs the races at 89.

From kindergarten on, Lauren hit the soccer field, practiced jazz dance and ballet and was out riding bikes.

"You couldn't keep her in the house," Larry says.

But when she was 9, she began to experience a change. While using roller blades, Lauren started losing control and falling.

Her mother, Pat, and father took her to a neurologist. Upon spotting her stagger, he diagnosed her almost right away.

"I had no idea what Friedereich ataxia was, and neither did" her parents, Lauren remembers. "But when the doctor talked to them, I remember the shocked looks on their faces." she says.

The family rode home in silence.

Friedereich's ataxia, an inherited disorder, affects just one in 50,000 people in the United States. Sufferers have a defect in the gene that creates frataxin, a protein the cells use to create energy. The lack of frataxin leads to degeneration in the spinal-cord neurons that control the muscle movement of the arms and legs.

Those with FA, as it's called, experience gradual loss of coordination in the limbs, increasing slurring of speech and susceptibility to intense fatigue.

"It's slowly and relentlessly progressive," says Thomas Crawford, an associate professor of neurology and pediatrics at Johns Hopkins Children's Center. "It robs mobility and coordination, making all the usual bits of normal life more and more difficult over time."

Sufferers have higher-than-normal risks of developing scoliosis, diabetes and heart disease. Most rely on wheelchairs. Average life expectancy is 40 to 50 years.

Lauren's parents were unable, at first, to find a comfortable way to discuss the diagnosis with her — in part because they didn't want her dwelling on bad news she couldn't change.

Even Lauren, who heard the diagnosis and the doctor's explanation, couldn't take it in.

"I knew it was something serious, but I didn't," she recalls. "I figured it would go away in six months. I had no idea how FA was going to affect my life."

Withdrawal

First came years of denial. Between 9 and 14, Lauren found herself stumbling frequently, veering into objects. She lost the ability to dance, her speech slowed and she tired quickly.

Still, she didn't look much different. Much of the time she felt all right. She'd figured she'd get better.

At 12, she tried out for softball. She focused enough to smack a few line drives, but dropped the ball so often she didn't make the cut.

"I brought her home, went into my room and cried like a baby," her father says.

At 15, she was ready for answers. She sat down and Googled "Friedereich's ataxia" (it's named for the German physician who first described it) and began to read.

The details were a horror. She would not get better. She would lose the ability to cook, get dressed, walk. She might develop a curvature of the spine requiring surgery, as well as diabetes or cardiomyopathy, the heart-muscle failure that kills more ataxians than any other side effect.

FA presents a tough paradox, Crawford says. It leaves brain function untouched, but that means sufferers must come to terms with a difficult fate.

"We're talking about normal people inside these increasingly distressed bodies," he says.

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