Patient finds support, help, and hope for Friedrich’s ataxia

Taylor Hurdle was 10 years old when she began to stumble. 

“We thought maybe I was just clumsy,” she says. Hurdle recalls suddenly veering to the left one day and running into a computer cart. Her Nana took her to the doctor, who wanted her to see more doctors. 

Eventually, Hurdle was diagnosed with Friedreich’s ataxia (FA). This rare, inherited disease affects the nerves, spinal cord, and cerebellum. The cerebellum is part of the brain that controls balance.

Hurdle’s family struggled to find treatment. Some treatments were too far away. Others were too expensive. And Hurdle’s condition got worse. By 8th grade, she was in a wheelchair.

Refusing to give up, Hurdle kept searching for help. She found FACOMS, a clinical trial for FA at St. Jude Children’s Research Hospital, and she asked her doctor for a referral. FACOMS is part of the hospital’s new program focusing on neurological diseases. Under the care of Richard Finkel, MD, Hurdle now gets the support, help, and hope she needs.

Finkel and the Center for Experimental Therapeutics at St. Jude are also working with other scientists and doctors from around the globe to identify drugs that can help Hurdle and others like her with FA. 

Hurdle says she loves being part of the St. Jude community. 

“I love all the people here. They’re so sweet,” she says. 

An aspiring screenwriter, the 20-year-old often writes about her journey, including her experiences with grief and loss. 

“It’s the loss of the things that I could be doing that I can’t do,” she explains.

Hurdle says she is also grateful for the connections she has made. If you ask how she feels about St. Jude, she lights up. 

“I love it. It’s so awesome,” she says. “I love that it’s made for kids. It’s not really made to feel like a hospital. Kids get to be kids and not feel like they’re sick.”