Diann Shaddox Foundation for Essential Tremor
Sisters share the storms of dystonia, but also the rays of sunshine in their young lives
Movement disorders are not just for old people.
Northern Kentucky Voice: Your voice, your story
Jessica Noll Oct 26, 2014
UNION, Ky. – Curled up in a chair hiding her face, too nervous to sing, 4-year-old Olivia Phelps' nerves are getting the best of her, but eventually the words, “let it go, let it go” pop out of her mouth in sync with the movie “Frozen”.
Considering she couldn't speak or walk until she was 2, the simple feat is remarkable.
Olivia and her one-year-old sister, Madison, share a love of music and drawing. They also share a rare neurological movement disorder called dystonia. It’s not only a rare disorder, but incredibly rare to have two siblings suffering from it. When the storms of dystonia hit, they are painful and can last hours or days. Their tiny muscles tighten and their limbs become cramped with involuntary muscle contractions.
It’s a battle with the unknown they take on daily. A battle that their mom has made her mission to beat with awareness and fundraising for research. A mission she wants them to continue as they grow older because, while not fatal, dystonia's storms will never cease and can escalate.
“It’s a silent disease people can’t see all the time,” the Warsaw, Ky., mother of four said. “Medication isn’t a cure.”
Become a WCPO Insider to learn more about dystonia and what Melissa is doing for Madison and Olivia, and for other families like hers.
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