CHANNAHON – In 2008, when she was 12, Emily Young was diagnosed with Friedreich’s ataxia, a genetic condition that causes progressive damage to the nervous system.
But it doesn’t keep Young, of Gibson City and now 20, from riding a recumbent bicycle and fundraising for a cure.
Friedreich’s Ataxia Research Alliance hosts the nationwide rideATAXIA to raise money for research. Becky Young, Emily’s mother, said five annual rides are held throughout the country.
The Midwest ride, now in its fifth year, offers fully supported 4-, 12-, 27- and 50-mile scenic cycling routes in Channahon, Morris and Minooka, Becky said.
“We looked around for an area that would be close to Chicago, yet have some country and scenery, and be a safe place for riders,” Becky said.
About 350 people participated last year, mostly people with Friedreich’s ataxia and their family and friends, Becky said. That included kids riding in pull carts and seniors age 65, she added.
This year, organizers are hoping for more community involvement.
“I think FARA is trying to stress that this is for people of all abilities,” Becky said. “We’ve actually had people push their rides through the 4-mile route so they can participate because they physically can’t do it. [At rideATAXIA] there are all kinds of bikes and all kinds of riders.”
Getting involved in FARA is a family affair. Emily’s father, Rick Young, is riding this year, as is her brother, Andy Young, who will pull his 2-year-old daughter in a cart, Becky said.
Becky has biked in past rides, but is stepping back this year to help run the event. In addition, Emily’s sister, Jamie Young, now works for FARA. Jamie’s title is rideATAXIA & Team FARA program coordinator, Becky said.
So far, Team Emily is the top fundraiser for the 2015 Midwest ride, having raised more than $11,000. Last year, the Midwest ride raised $80,000, Becky said. This year the goal is $85,000, according to the event website.
“As a family and a community, we’re trying to raise awareness and funds for research,” Becky said.
No treatment, no cure
Becky recalled when Emily was diagnosed. She said Emily’s gait appeared different and thought Emily might have scoliosis. The family eventually ended up at Shriner’s Hospital for Children in Chicago, where Emily was quickly diagnosed with Friedreich’s ataxia through genetic testing.
“The doctors told us to come up without Emily just because it’s not easy news to hear,” Becky said. “So Rick and I made that trip alone.”
It was sobering news. Becky and Rick learned both parents must carry the gene for a child to be affected.
“They told us to take all our vacations now,” Becky said. “Because as time went on, that would become more difficult to do.”
Eighteen months after her diagnosis, Emily had her entire spine fused, a seven-hour procedure, Becky said. Her scoliosis – a symptom of Friedreich’s ataxia – had progressed, Becky said, and was pushing on her heart and lungs.
Balance also became an issue, although Emily kept her goal of remaining wheelchair-free until she graduated from high school, Becky said.
Emily also has mild heart disease and slowed speech, but fighting fatigue is her biggest challenge. Life expectancy with Friedreich’s ataxia varies. Some people reach their 60s and others pass away in their 20s, Becky said.
Currently, Emily is enrolled in a clinical trial, as the disorder has no treatment or cure, only symptom management. Even if a cure is not possible, Becky hopes the trial might slow – or even halt – the disease’s progression. Emily’s doctors also provided her with their cellphone numbers.
One is a neurologist at The Children’s Hospital of Philadelphia. The other is a cardiologist in Indiana. Both are leading researchers in the effort to find treatment, Becky said.
Becky said Emily may call them at any time, day or night, if she has a question, problem or just needs someone to talk her through a symptom.
“They are amazing people,” Becky said.
Friedreich’s ataxia imposes limitations on Emily, but it doesn’t stop her. Emily is studying human development at the University of Illinois in Champaign and wants to become a family counselor.
This past year, Emily lived on campus; this spring, she earned an associate’s degree in psychology.
“Family resiliency – like when a crisis happens to a family, getting diagnosed with a disease or having a loss – is a dynamic that interests me,” Emily said.
Although Emily enjoyed biking before her diagnosis, she enjoys it more now because it’s a physical activity she can do often. A good day for Emily is any day the weather is nice and she can spend time with family and friends.
“No one really knows what their life is going to be like,” Emily said. “So every day just has to be a positive experience, working toward the future.”
IF YOU GO
WHEN: July 24. Registration begins 7 a.m. Lunch begins at 11 a.m.
WHERE: Central Park, 24856 W. Eames St., Channahon
ETC: Outback Steakhouse, Carrabba’s Italian Grill and Bonefish Grill provide lunch for all participants after the ride.
CALL: Friedreich’s Ataxia Research Alliance at 484-879-6160