Community Corner

Have Wheels, Will Ride: Teenage Girl Pedals After Medical Breakthrough

Seventeen-year-old Emily Young—who is battling to overcome a rare neuromuscular disease—will attempt to cover 12 miles in Ride Ataxia/Chicago, a July 21 cycling event that begins and ends in Central Park in Channahon.

When 17-year-old Emily Young inches toward the start line at a cycling event, she expends nervous energy much like any other teenager.

She is swept up in the sea of humanity and her heart races with excitement. She has set a goal to cover 12 miles in the July 21 Ride Ataxia/Chicago event which begins and ends at Central Park in Channahon. Nearly 300 riders are expected to participate with all proceeds going to the Friedreich’s Ataxia Research Alliance (FARA).

“The morning before—everyone comes out, of course, to register and get ready,” Young said. “It’s great just to be in the starting line, getting ready to go. I’ll probably be thinking, ‘I hope it doesn’t rain.’ That’s never fun. And, I don’t know, just good things.”

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Good things, indeed.

Young will attempt to go out-and-back on the I&M canal towpath in her longest ride since she was diagnosed with Friedreich’s Ataxia, a rare neuromuscular disease affecting 1 in 50,000 people. The progressive disease results in loss of coordination and usually a serious heart condition called cardiomyopathy.

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Young, who lives on a farm in rural Gibson City, Ill., with her parents, Rick and Becky, is all heart. After battling scoliosis for two years, she underwent a 7½-hour surgery to implant titanium rods and screws to fuse her spine at Shriners Children’s Hospital in Chicago.

And while there is no treatment available today for FA, she is pedaling toward a medical breakthrough, if not one that can help her, then perhaps others down the road. She takes supplements and medicine for the beginning stages of heart disease.

She has balance issues, severe fatigue and slowed speech.

She’s pretty fast on her recumbent bike, a specially designed “tricycle” made by Catrike that enables her to ride without straining her back. She already has participated in three Ride Ataxia events, including one in Dallas in March where the temperatures dipped into the low-40s and rain fell much of the day.

Still, she covered six miles.

“She has taught our family a lot about life, laughter and the power of a positive attitude,” said Becky Young, Emily’s mother.

Her family has turned this battle into a team effort. Emily’s older sister, Jamie, 25, works in public relations with FARA in Downingtown, Pa. Her older brother, Andy, lives in Vernon Hills, Ill., with his wife, Tara. He is the dean of students at Chicago’s Golder College Prep and strives to inspire the young people he works with with stories of Emily’s courage.

People who know her are blown away by her ever-present smile and bubbly personality.

“I’ve known Emily forever—we’ve gone to school together since pre-school,” said Gibson City’s Paige Cowell, 16. “I remember Emily playing softball, and she was always that girl full of energy. Her sister loved volleyball, and she always wanted to be like her sister.

“I don’t think she’s changed that much since her diagnosis of FA. She just lives every day like she always has—she just keeps going and doesn’t let it change her. Coming from me, I would never be able to have the attitude she does. But she is the greatest—she’s always going.

“She’s the friendliest person in the school, I guarantee it.”

Cowell and Young are soon-to-be seniors at Gibson City-Melvin-Sibley High School. Young has plans to attend college—perhaps at the University of Illinois. She is undecided on a major.

There is no indecision with her riding. She is a girl on a mission.

“Of course, it’s inspiring,” Cowell said. “And, well, since she can do it, I feel like I need to get out there and do it with her.”

“As the disease progresses—for a lot of people with FA—the biggest issue they will face will be cardiomyopathy—disease of the heart,” Becky Young said. “So, that’s really important for Emily to keep her strength up and to keep her heart healthy as long as possible.”

Becky and her husband, Rick, cope the only way they know how—by taking each day as it comes, occasionally letting their minds drift from the schedule nightmare of doctor’s visits to the more mundane chores of running a grain farm.

“You always think about things like this and say, ‘I’m never going to be faced by that,” Becky Young said. “But when you are faced with it—it’s just one of those things where you get up every day and you think, ‘Today is going to be a good day.’ We’re not doing this alone. We have so much support from our community—friends, family and our church, the school.

“So, a lot of the fundraising we’ve done over the last five years has really been a community effort. It’s just amazing that you can go to that same well time after time after time and people are so willing to give of themselves.”

Emily Young gives everything she has every day—to battle her illness and act as a poster child for FA. She trains by riding on country roads that cut through the cornfields in Central Illinois. During her journeys—when she is alone with her thoughts—her mind wanders.

“We’d never heard of it,” she said of Friedreich’s Ataxia. “It was definitely very scary to hear that I had the disease and to hear that I was going to have to be in a wheelchair some day. That’s not something you want to be told.

“And, I think, just the unknown is really scary.”










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