Since his birth, 15-year-old Josh Phillips has had a condition known as "Brittle Bones," a disorder in which the bones frequently fracture with little or no cause. Josh has only taken a few steps in his entire lifetime and has nearly been confined to a wheelchair.
But "confined" is the last word those who know him best would use to describe the teen.
"Punk-rock, independent and grooving. Nothing is stopping him."
These are just a few of the words Danielle Kerley would use to characterize Josh, and indeed, a wheelchair isn't standing in the way of this video-game loving, skate-park enthusiast.
And with a shock of blue that highlights his mohawk-style haircut, it's not difficult to spot Josh cruising around town.
Overwhelming support
Thanks to the efforts of friends, family, and the support of the Fremont community, Josh's cruising abilities may be taken to even greater strides.
Fremont Auto Detail hosted a June 19 benefit to raise funds to purchase a brand-new wheelchair for Josh. The chair, known as the Permobile Robo, will allow Josh to have increased mobility.
Visitors who attended the benefit were greeted with a lively sign splashed with red, yellow and orange, proclaiming the words "Jammin' for Josh."
More than $3,000 was raised at the event, which included live punk-band performances and featured an evening showcase of local actors, dancers and other artists.
To purchase the nearly $10,000 wheelchair, Josh and his mother, Donielle Phillips, had applied for financial assistance last year through the Department of Social and Health Services. When they were twice denied, Kerley knew she wanted to help.
Within two days of the event, Kerley, who has been a friend of the Phillips family for some time, had mobilized friends and other community volunteers to assist in the all-day benefit, with nearly 50 local businesses and organizations donating to the cause.
"Disbelief," Phillips said in regard to her reaction to Kerley's offer to help. "I thought it was incredible."
Josh recalled the excitement he felt when he heard the news that Kerley would be organizing a fund-raiser in his honor.
"It's really hard to describe the emotions. I feel really, really good about it," he said. "If I have access to the floor, I'll be able to exercise and get around again."
Kerley applauded the efforts of her fellow community members who lent their support to the benefit. Among the major donors were the Ballard Rotary Club, which contributed $1,000. Fremont's American Music store donated various stage equipment, and a stage was lent by the Phinney Chamber of Commerce.
"This community has a heart," Kerley said. "People just came together."
Paint cans also were distributed around the area for individuals to make cash donations.
If any funds in excess of the cost of the wheelchair are raised, Kerley said she would use the extra money to have a ramp installed in the Phillips' van.
More accessibility
The new wheelchair will dra-matically extend Josh's capabilities. In addition to helping him reach the floor, the chair's hydraulics will allow Josh to reach light switches and countertops.
It's such a thrill for him, Phillips said, that Josh has even mentioned looking forward to the prospect of doing the dishes.
"We feel that this wheelchair will most benefit him and give him strength and mobility," Phillips said. "He's not getting the exercise he did before the surgery three years ago."
It was because of that surgery, Phillips said, that Josh was physically destroyed. During the operation, five of the six rods in Josh's body were replaced, but according to his mother, it was too much for his body to take. The surgery, which had been set to be complete in five hours, lasted nine, and Josh suffered a severed nerve in his left arm.
"The entire experience was extremely traumatic for him," Phillips said, "and he's never regained his full strength."
There is no cure for the "Brittle Bones" condition, which afflicts between 20,000 and 50,000 people in the United States alone.
But for Kerley, Josh exudes a personality that defies whatever constraints his condition may pose.
"I've never seen a kid with so much free will," she said. "He's just amazing. He doesn't meld into what society says."
For Josh, living through his condition hasn't dampened his outlook on life. In fact, it has done just the opposite.
"I have a positive outlook on life," he said. "Because I've seen things differently than other people, and [because] I've seen a lot of people in more pain that I'm in, I'm just thankful for what I have."
Those interested in making a donation or learning more about Josh's story can visit www.pimentohead.com/jamminforjosh.
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