Family, 5-Year-Old Girl Aim To Raise Awareness About Rare Disease Triggered By Exposure To Sun
WAYNE, Pa. (CBS) -- There's a rare disease that's triggered by exposure to the sun. In Philadelphia this weekend, there will be the first walk to raise awareness about the condition.
It's often misdiagnosed and when treatment is delayed, the disease can become deadly. A family in Wayne with a little girl who has the rare disease is spearheading the effort to raise awareness.
This is no ordinary tree house. Yes, there's plenty of fun that happens here, but for 5-year-old Kaia, it's a life-saver.
"It helps her avoid the sun," Kaia's dad, Dave Ettingoff, said.
For Kaia, sun exposure triggers a rare autoimmune disease called Juvenile Myositis, or JM. The body's immune system attacks its own cells and tissues. It can be life-threatening.
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Skin rashes were the first sign, but doctors initially dismissed them as eczema.
"It took about five months to diagnose," Kaia's mother, Kate Ettingoff, said. "What we didn't know, what was happening under the skin, which is her immune system, was also attacking her muscles."
There is no cure, but JM can be managed with chemotherapy and high doses of steroids, which cause a variety of nasty side effects.
"I have to take icky medicine to make it go away," Kaia said.
For this chatty adorable little girl, sunscreen isn't just a hassle, it's very serious business.
"She got a little tiny burn on her nose that brought back all of her symptoms," Dave Ettingoff said. "She's very brave and that makes it easier, but its still hard to see your child going through that."
Because it's a rare disease, research has been limited and many doctors don't even know about it.
"We're mainly trying to raise awareness," Dave Ettingoff said.
Kaia's parents are organizing the first Walk Strong to Cure JM in Philadelphia.
"We're doing it at 4 p.m. so our kids won't be out in the sun at peak sun times," Kate Ettingoff said.
The Walk Strong to Cure JM is taking place Saturday, May 4 on Independence Mall. You can donate to the cause here or find out more about JM here.
