Back in September 2014, Katie noticed her feet turning inward and her legs becoming stiffer. Tremors and painful spasms emerged in her hands and legs which made everyday tasks like walking and holding a pencil more difficult. An independent driver for three months, the then 17-year-old had to give up her keys. Gradually the tightness progressed upward to affect muscles throughout her body. After months of tests, frustration, miscommunication, and intense therapies with little improvement and no official diagnosis, she was evaluated by a team of specialists at Mayo Clinic in Rochester, Minnesota. After their last test came back indicating a neuro-metabolic problem, she was diagnosed with a rare generalized dystonia—a movement disorder that causes muscles to co-contract and twist leading to issues with posture and mobility. Since the diagnosis, she has been taking medication to increase her brain’s levels of the neurotransmitter dopamine and to calm her overactive muscles. To help prevent the development and recurrence of contractures, every three to four months she receives botulinum toxin injections to forcibly relax specific muscles controlling her feet, legs and back. Since her diagnosis, she has undergone a tendon release surgery and in July of 2016, she underwent deep brain stimulation (DBS) surgery to help her regain some control over her muscles which yielded some mildly successful results.
As time passes, Katie will continue to require lifelong treatments to help control the effects of her condition, but in spite of the challenges she faces on a regular basis, Katie is rarely seen without a magical smile on her face. She does her best to stay positive, to keep learning from the people who enter her life, and to maintain her determination to be a light in the dark. Though there is limited understanding and no known cure for her condition (“yet”), all of her experiences throughout the last four years have fueled her interest in the fields of neurology and psychology. Katie is pursuing an undergraduate psychology degree at Augusta University in Augusta, Georgia. She is passionately interested in the clinical neurosciences, including neurology, as well as education, research, and creative pursuits. She also really enjoys learning, solving puzzles, writing, sharing stories, and making other people smile. She is my hero!
So many people have asked us if we have a GoFundMe page for Katie. Now, I can say yes we do! All the funds donated on Katie’s behalf will help support her ongoing travel and medical expenses associated with her Mayo Clinic visits. We are so grateful for your support and generosity.
- Paul Ryan
- Lynn & Steve Staley
- Steve Wilkerson
- Latoya Smalls
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