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Local Parent Recalls Son's Battle With Rare Disease

1.8 from 4 votes
Tuesday, January 31, 2017

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Weston, WEST VIRGINIA - Every year around this time, one woman in Lewis County relives the days she spent in the hospital with her son. He was diagnosed with a rare illness they first thought was the flu, but she found herself signing medical papers to save his life. He's a survivor of Kawasaki disease.

"I never dreamed that we'd be on our way to Ruby Memorial Hospital for a stay, a treatment, to save his life," said Agnes Queen. "Because they said he's really sick."

Queen thought her six-year old had the flu. When his rash spread, his tongue swelled up, and he could barely walk she learned what Kawasaki disease looked like and what it felt like to watch her child go through it.
"The first treatment his body rejected, which was quite scary because you sign papers that your child could die," she continued. "They brought in a crash cart and sat next to his bed when they started the second treatment and I said, 'Why are you bringing that in?' And they said, 'Well if he was to reject the treatment this time they may not have time to go for it.' So it was a very long process."

Kawasaki disease inflames your blood vessels and is the leading cause of acquired heart disease in children, according to the Kawasaki Disease Foundation. Queen's son is alright now, though his heart will have to be checked for the rest of his life.
"It's scary because every time they get a fever or they get sick it's like, 'Oh my gosh is it back?'" Queen said.
Since this month six years ago, she's found 10 other families with Kawasaki disease in Lewis County. These families' efforts have led to an on-going study of the disease in the Appalachian region by the Centers for Disease Control and Prevention.

A local doctor says she sees a few cases every year.  "Any fevers that are persistent you should check with your doctor," said Dr. Mary-Ann Kroll. "That doesn't mean they have Kawasaki, but it's always good to get them checked out and make sure."
She and Queen say learning about the disease is very important to keep your child safe.

According to the Kawasaki Disease Foundation, symptoms include a fever for five days or longer, a rash, bloodshot eyes, swollen lips, "strawberry" tongue, which has bright red spots, swollen hands and feet with redness, swollen lymph nodes in the neck.

Author: Renata Di Gregorio
Source: WDTV
1.8 from 4 votes
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