12-year-old Kory Taylor danced, laughed and smiled her way through the Capitol 10,000 race this morning with her sister and parents right alongside her. To anyone walking or running near them, the Taylors look much like any other family on the course. There’s one key difference though: as a child, Kory Taylor could not walk, stand, swallow food or even smile. Her muscles just didn’t work.
Eight years ago, Kory was diagnosed with juvenile dermatomyositis, or JDM, a debilitating autoimmune disease that could’ve left her bound to a wheelchair for the rest of her life. The diagnosis and subsequent treatment has helped Kory and her family regularly participate in fun runs and walks around Texas to raise awareness for the disease that nearly took Kory’s life.
“You’re getting a diagnosis that you know nothing about, you’ve never heard of, and you’re terrified because it’s your little baby,” said Sissy Taylor, Kory’s mother.
Taylor explained that for about two months before Kory’s diagnosis, all of the muscles in Kory’s body grew progressively weaker as her body fought against itself.
“She was diagnosed when she was four, she couldn’t get up off the floor, she couldn’t brush her hair, she couldn’t get her arms up above her head… Her neck was always tilted,” said Taylor. “There were no muscles in her face. Looking back at pictures, you can see where her face was just kind of a blank stare.”
Since the diagnosis, life has changed drastically for the Taylor family.
“She gets up; the first thing she does is take medicine. She waits an hour; she eats breakfast and takes more medicine, because she has two medicines that can’t be taken together. We have an alarm go off in the afternoon, to make sure we eat dinner at a certain time because she has to take medicine with that dinner. Then we have to wait two hours because there can be no food in her stomach for her last pill of the day,” Taylor said. “So everything is based on a schedule. Every day. Seven days a week, 365 days a year and every morning is started with sunblock and proper clothing.”
Although most runners wore short-sleeved shirts today, Kory wore a long sleeve shirt under her orange JDM awareness shirt to reduce her exposure to sunlight, which provokes the autoimmune attacks on the muscles and skin. Kory’s steroid treatments also suppress her immune system, so her family has grown accustomed to carrying hand sanitizing gel to counteract the spread of disease.
The family is well-aware of the health risks associated with Kory’s participation in such public events, but Taylor says that their participation not only helps raise awareness for children like Kory, but also helps the family gain a sense of normalcy.
Kory’s older sister Kori, 14, has adjusted her version of normal to her sister’s condition. Kaci will soon turn 15 and is looking forward to taking driver education classes and getting her license so she can drive her sister to the hospital for her monthly treatments.
“It just becomes a new normal. Luckily she was only four, so this is all she knows,” said Taylor.
Unfortunately, this feeling of normality isn’t universal among JDM patients and families. Taylor mentioned that most children who are diagnosed later than Kory struggle with the idea of being pulled out of their favorite sports and activities. Once a stabilizing treatment system is arranged though, children like Kory can lead relatively normal lives.
“We always hope for remission, but I think now we’re a little more optimistic about ‘okay, now this is just how we live,’” said Taylor. “This is who we are, but we don’t let it define us, and just learn to live with it.”
Submitted by Olivia Starich