Fighting against dystonia

Samantha Staab

A year ago, 10-year-old Samantha Staab was wheelchair-bound and had a hard time even sitting up straight because her body was so twisted.

But this Saturday, she will be walking — and even occasionally jogging — the Gainesville Hawthorne Trail as a participant in the 2nd annual Season of Hope 5K/15K Run. 

“My (physical) therapist helped me train,” said Samantha, a fourth-grader at Williams Elementary in Gainesville. “If I got upset, she’d push me through it.” 

With every step, Samantha will be personally battling against her dystonia, a movement disorder that causes her muscles to contract and spasm involuntarily. 

But she will also be joining more than 300 participants in the Dec. 10 run in the collective fight for a cure and improved treatment for movement disorders. The event supports care, research, education and awareness for children and adults with dystonia, Parkinson’s disease and movement disorders. Proceeds from the run benefit the UF Center for Movement Disorders & Neurorestoration and Tyler’s Hope

“She decided she was getting up from that chair and never going back to it,” said Meredith DeFranco, a physical therapist at the Center for Movement Disorders, who began working with Samantha this summer when the girl was still in a wheelchair. “I don’t think I’ve met another 10-year-old as mentally tough as she is.” 

Samantha’s remarkable progress is credited to deep brain stimulation at the UF Center for Movement Disorders and intensive physical therapy — combined with plenty of hard work, will power and determination on Samantha’s part. 

“The kid’s got great spirit,” said Michael S. Okun, M.D., co-director of the Center for Movement Disorders and Neurorestoration. “The surgery helped her, but she needed intensive rehabilitation.” 

Samantha was diagnosed in 2008 with dystonia when she was 7 years old. Her older brother Tyler, now 14, also was diagnosed with the disorder at age 7. Tyler also underwent deep brain stimulation and is also now able to walk. 

The dystonia caused Samantha’s ankles and feet to turn in so much she couldn’t stand and she had deep brain stimulation in 2010, said her father Rick Staab, who is also president of Tyler’s Hope for a Dystonia Cure, a foundation that raises money for the disorder. At first, there was little change in his daughter’s condition, he said. 

But then, Samantha’s deep brain stimulation settings were changed from low to high frequency and slowly her ankle muscles began to loosen and she started to show improvements this past summer, he said. By fall, she was able to get out of her wheelchair, and eventually even stop using her walker. 

She completed her first 5K for the American Heart Association last month, but is determined to complete the Season of Hope in under an hour and has been practicing the course, he said. 

“It’s amazing because she will sweat and have a hard time, but she’ll say, ‘All right, I’ll do it a little bit more,’” Rick Staab said. “Her stubbornness and her will power is just tremendous and it rubs off on others — it’s very inspiring.” 

Race Director Leslie Okun said they expect more than 300 runners from all over Florida and from the Southeast, but that Samantha’s will to compete and to finish the race has set the tone and spirit of the event. “It reminds us what we are racing for.” 

Samantha won’t be alone on the run. An aunt is flying in from North Carolina to do the course with her and DeFranco will be simultaneously running the 15K course. Her younger brother Luke, 7, will also join her on her walk. 

“He’s going to run (the course) and then come back and walk it with his sister,” said Rick. 

As for Samantha, she is still setting goals for herself. 

“I would like to do a 15K next year and run it,” she said.