Conner Hammett / Staff photo -- From left; Plano East graduate Emily Penn prepares for her 25-mile cycling trek at Ride Ataxia, set for March 23 in Denton, with her trainer, Richard Wharton. The 20-year-old was diagnosed with Friedreich's ataxia, a neurological disease that attacks the nerve tissue of the spinal cord, at age 15.
At age 15, while taking a track class at Murphy Middle School, Emily began experiencing tendonitis in her knee. During treatment, however, an orthopedic surgeon honed in on Emily's scoliosis, a condition her pediatrician was already monitoring.
The surgeon suggested Emily be taken to Scottish Rite Children's Hospital for a closer look at her spine. Emily underwent a series of tests, including a CT scan, an MRI and a walking analysis that revealed an unusual gait consistent with symptoms of a neurological disorder.
After blood testing and a genetic screening, doctors came to the diagnosis of FA, a life-shortening disease that affects the nerve tissue of the spinal cord. Symptoms include muscle weakness, loss of coordination, difficulty walking and slowing or slurring of speech. Most patients become wheelchair-bound 15 to 20 years after diagnosis, and heart complications often arise from the disease, causing premature death.
"My next move was to cry for about three days and go on the Internet," Alexis said. "... [The internet] is a great place, but it's all dark and despair and gloomy, and I'm not a dark and despair person. In fact, I'm quite the opposite; I'm a very positive and optimistic individual."
The family set out on finding solutions, eventually discovering the world of clinical trials. Soon after, Emily was undergoing trials in an effort to help develop new treatments for the little-known disease.
"I tell Emily every day, 'You are going to be part of the cure,'" Alexis said.
Five years into her diagnosis, Emily's walking and speech impairments have continued to grow more noticeable. But the Collin College student and Plano East graduate refuses let the disease stop her in her tracks.
Since January, she has been training at the Cycling Center of Dallas for the third-annual Ride ataxia cycling event, which will be held March 23 in Denton. Last year, the event raised $2 million for the Friedreich's Ataxia Research Alliance, a number event planners hope to surpass this year.
Since the balance problems caused by FA preclude Emily from using a traditional bicycle, she will use a recumbent, or reclining, tricycle, a piece of equipment that was donated to her by Richardson Bike Mart and the Texas Irish Foundation in November.
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College student poses challenge to life-threatening disease