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Arthritis Hill and Other Tales of Triumph from Duke's Camp Kaleidoscope

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Duke Health News 919-660-1306

Note to editors: This is the 20th anniversary of Camp
Kaleidoscope, believed to be the only summer camp in the nation
that brings together children with all types of chronic and
terminal illnesses. Camp K, held from July 12-30 at a Girl
Scout camp on Kerr Lake, has three week-long sessions for
children of different ages. Reporters can arrange to visit the
camp and interview medical staff and selected campers by
contacting the Medical Center News Office at (919) 684-4148.
Videotaped interviews and b-roll are available upon
request.

ARTHRITIS HILL AND OTHER TALES OF TRIUMPH FROM DUKE'S CAMP
KALEIDOSCOPE

DURHAM, N.C. - The children called it Arthritis Hill. It's
one of many gentle slopes that dot the woodsy terrain of Camp
Kaleidoscope, a Kerr Lake retreat for sick children, but for
the little girl with arthritis, it might as well have been Mt.
Everest.

Unable to climb over it, she was ready to give up. She
struggled and cried and got angry.

It looked like yet another moment of defeat born out of a
crippling disease that robbed her of mobility, strength and
freedom.

Her new friends, however, would not let her walk away
disappointed. Wearing caps to cover their baldness, toting
portable heart monitors and IV drips, carrying inhalers to
stave off asthma attacks, the group of youngsters made it the
week's project to spur their friend to climb the hill. She did.
And she left Camp Kaleidoscope a different little girl.

"I can't forget that child," said Barbara Frothingham, a
nurse practitioner at Duke who volunteers as a camp counselor
each year. "The way that group urged her forward ... who's
really got the strength here? I'm just blessed to be able to
watch it happen."

These are the stories that infuse the rugged terrain of Camp
Kaleidoscope with warmth and humanity, where the land and water
overflow with life-changing events, intimate dramas, and the
everyday tears and laughter a summer camp evokes.

It's a place where more than a hundred chronically ill
children come together, where Duke has created a setting that
allows so many to see they don't always have to feel different
from their peers, Frothingham said. There is so much they can
do.

Camp K, which began the first of three week-long sessions
Monday, sets up a mini field hospital of sorts. The counselors
are doctors, nurses, an array of medical providers and
volunteers who get to see the children as kids and only kids,
for what might be the first and only time. They, and their care
too, are changed by the interaction so unique to this camp.

Jonta Carter, 8, of Danville, Va., is in her third summer at
"Camp K," as the kids and counselors call it. "It's the funnest
time I've ever had," she told her mother before beginning camp
Monday.

Jonta, like so many kids there, sees Camp Kaleidoscope
mostly as fun, partly as an escape from home life that often
unavoidably revolves around sickness and treatment. She has
sickle cell disease, an inherited blood disease that causes
terrible fatigue, excruciating pain and an uncertain life span.
Two years ago, Jonta suffered a stroke, one of sickle cell's
worst outcomes in children.

On the trails and lakes of Camp K, you can't miss Jonta's
shining smile, her white beads glittering against her dark
hair. And you can't help seeing the way she walks, and holds
one of her arms. Jonta's stroke damaged her left side; it may
never return to normal. But she pays little attention. Jonta's
attitude is "accept me the way I am." And a lot of people do.
At Camp K, everyone does.

Susan Mullin, director of Duke's Child and Adolescent Life
Program, has organized and run Camp K for the past three years.
"The will to live, to be normal, is just amazing. In
comparison, the stress in our lives is nothing. If you come to
camp, it's a given you'll leave here inspired to get the most
out of life. If these kids can do it under their burdens, why
can't the rest of us?"

Alex Shaffer, 8, of Fayetteville, decided to return to camp
for the second year even though that meant missing a
championship game for his Little League baseball team.

"It was a hard decision," he said. "But I decided I wanted
to go back to camp."

The boy with leukemia, a kid who endured 20 spinal taps to
receive his chemotherapy, saw more of life last year at camp
than he'd ever thought was out there: kids with so many
different illnesses, from so many varied backgrounds, all
finding new friends, people they could trust to tell how they
really felt about the obstacles they face.

At home, or on the ballfield, Alex said he tends to feel
like he stands out -- that others are always talking about that
cute, sick boy. "Well I'm not sick anymore," he says. He's in
remission. So, Alex points out, he can play just as hard and
laugh just as hard as any kid.

A trip to Camp K is like getting a dose of courage kids
didn't know they had, and a new kind of attention from health
caretakers who are usually poking and prodding instead of
talking and listening as much as they might like, Mullin
said.

Alex may be better for now, but that hasn't meant he misses
this place any less. He said he's pretty sure his friends there
wanted to see him, and Alex needs Camp K too.

"That's what's so special to me," said Bill Schultz, a Duke
physician assistant in hematology and oncology. "I've sat in
those cabins at night and watched two boys huddled together,
'secretly' talking about how afraid they sometimes are, or
whether their parents try to protect them too much. I just
smile," Schultz said. "Where else am I going to be exposed to
that - where else can kids with their kind of suffering and
sensitivities get close to each other that way?"

Camp is packed with special events, celebrity guests and
typical camp activities. For some children, it is literally a
once-in-a-lifetime trip -- a child with HIV or a brain tumor,
for example, might not make it back. So with the passion of the
people who put it together, Duke's pediatric staff, the Girl
Scouts who share their Camp Graham with the Duke patients, and
the many generous donors who make it all possible, there is
nothing overlooked at Camp Kaleidoscope.

"It's meant to be a dream week for children who feel many of
their dreams are denied," said Mullin. "We should celebrate and
honor these kids. They have earned the right to cut loose in
the wilderness, and not be too restrained. We make sure they
are safe on site, and most important, that the experience will
stay with them for years to come."

Camp medical director Dr. Robert Drucker said: "I can't take
my eyes off the tiny ones who go swimming for the first time,
dunk their heads in the lake water, and come up spewing so much
delight. They give me far more than I've ever given them."

Jonta could use a great week this year. Her family's home
burned recently, and they lost all their belongings. But her
parents scraped together the things she'd need for camp.
They're making sure she gets to the "funnest" time of the
year.

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