For parents of children with dystonia, that frustration is a horrible, ongoing reality.
Parents like Melissa Phelps from Gallaten, Kentucky knows this all too well—her young daughters Madison and Olivia both have dystonia resulting from a rare metabolic disease, and both have spent much of their lives dealing with painful muscle spasms affecting most of their bodies; sometimes, these spasms ted by the last for hours.
Thankfully, as reported by channel 12 in Cincinnati, Phelps’ daughters are currently on medications that are helping to manage their symptoms.
But for many parents, the unpredictability of dystonia can make daily life a challenge. Phelps knows this, and like hundreds of others across the country, she’s doing something about that…
She’s going to the zoo.
For the past three years, Phelps has organized a “Dystance4Dystonia” Zoo Walk at the Cincinnati Zoo to raise funds for the Dystonia Medical Research Foundation.
The Cincinnati Zoo Walk is one of several across the country that are held during Dystonia Awareness Month. Check out our coverage of last month’s Dystonia Awareness Month.
Phelps has a personal stake in this—the DMRF helped her learn about dystonia when her daughters were diagnosed and connected her with other families who knew what she was going through.
Phelps has testified on Capitol Hill for dystonia awareness, and was recognized by the DMRF for her efforts. She also founded the Cincinnati & Northern KY Dystonia Support Group, and her Dystance for Dystonia Walk has raised an estimated $100,000 for the DMRF!
This year’s walk, held on September 12th, featured over 700 enthusiastic walkers on 40 different teams. Regardless of the amount raised, Phelps already knows it’s a success because she could see for herself how her community had rallied for her daughters and everyone living with dystonia.
If more communities can duplicate this success, the closer we’d be to making sure no one has to face dystonia alone.
To see the full story of this great effort to raise dystonia awareness, check out channel 12’s coverage.
