PASCO -- Griffin Sall has never had a sunburn.
The 6-year-old Pasco boy never leaves home without a hat, and he religiously wears SPF 50 sunscreen.
For the rest of his life he will have to limit time spent outside, because even the tiniest sunburn could cause his body to attack itself.
Griffin suffers from juvenile dermatomyositis (JDM) -- a rare autoimmune disease characterized by skin rashes and inflamed muscles as the body's immune system attacks blood vessels.
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"It was really scary," said his mother, Jana Sall. "And you wonder, why us? Why him? What did we do?"
About 5,000 children in the U.S. have the disease, according to the Cure JM Foundation.
Because it's so rare, little funding is directed toward researching the disease, so the Salls have taken on that challenge.
"So it is up to the families and friends of the affected kids to raise that money and bring awareness to this debilitating disease," Jana Sall said.
In the past 10 months, she has collected more than $9,000 in donations from supporters who want to help find a cure for Griffin.
And Saturday they plan their first fundraiser, "Hike for a Cure."
Griffin's dad Bryan Sall and 10 friends plan to hike Mount Adams.
There also was a walk-a-thon in April in Griffin's honor when Children at Sweet Pea Academy in Pasco raised more than $5,000.
Jana Sall donated the money to the Cure JM Foundation, a nonprofit that works to raise awareness for a cure.
Griffin was diagnosed in August 2008, just before his third birthday and had not suffered any muscle damage at that point, his mom said.
"Because we caught it early and started giving him medication, he never got to that point where he couldn't walk or get out of bed," she said.
Through time, the monthly trips to Seattle Children's Hospital waned as Griffin's condition improved. In February, he stopped taking medication, and his family hopes he will be in remission by his next checkup in October.