Stomping on Dystonia for Fun and Inspiration

Dystonia May Slow Her Body, But It Can’t Stomp Her Spirit

Few times in life are as exciting—or as hectic—as the last days of high school. Between friends and classes, social calendars and college planning, every day can be an exhausting whirlwind of activity. Anyone who’s been there probably remembers it; anyone who hasn’t been there yet, brace yourself: It’s going to feel like running a marathon.

But imagine you’re in high school, and you literally feel like your body is running a marathon. Imagine your muscles are contracting by themselves and spasms are wracking your body. Imagine being exhausted because you can’t control your movements, and that simple tasks like walking, swallowing, and talking are impossible.

Image Source: The MidWeek Wire Courtesy of DYSTONIA MEDICAL RESEARCH FOUNDATION Caitlyn Connelly (left)

Caitlyn Connelly of Bensalem, Pennsylvania doesn’t need to imagine it, because she’s been living with generalized dystonia since the age of 12. Now 17, Caitlyn gets around by motorized wheelchair and needs a feeding tube. Traditional medications failed to ease her dystonia symptoms; spasms and involuntary muscle movements, so doctors implanted electrodes on her brain connected to pacemakers in an attempt to calm her involuntary movements as a dystonia treatment.

If you think all of that has slowed Caitlyn’s life to a crawl, you’d be wrong. Determined to live her life to the fullest, Caitlyn threw herself into her classes and has been making plans to attend college. She was inducted into the National Honor Society, and her persistence impressed her advisors, teachers, and friends.

400 Runners, 5 Kilometers, 1 Ass-Kicking Inspiration

And before she graduated, Caitlyn wanted to do something to educate and enrich her community—and to help raise funds for a dystonia cure. That’s when she came up with the idea for the Stomp Out Dystonia 5K, with proceeds going to the Dystonia Medical Research Foundation. With the help of her close friend Melanie Edwards, Caitlyn organized the 5K from start to finish, pulling together volunteers, logistics, and promotion. And while her ultimate goal was to educate the community about the challenges people with dystonia go through, Caitlyn also hoped people would be able to come together for a good time while making a difference.

PW_Shoe TieUltimately, 400 people showed up to make a difference on May 16th, 2015. In a write up by the Dystonia Medical Research Foundation, Caitlyn said she was

“blown away by the amount of support we received.”

Caitlyn and Melanie were presented with a Certificate of Appreciation for their efforts by the Dystonia Medical Research Foundation, and in the days following the 5K donations continued to roll in. Regardless of the final tally, Caitlyn demonstrated that the key factors in winning the race against dystonia aren’t speed and strength: they’re determination, perseverance, and compassion.

Want to read more? You can check out the full report and some video footage from the 2015 event from the Dystonia Medical Research Foundation here.

We can’t wait to see what Caitlyn does next! Do you know any kids that are a kick-ass inspiration? Contact us as [email protected] to tell us about it!


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