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The little girl could barely contain her excitement.
In August, she will attend summer camp for the first
time.
Born with a severe skin disease known as epidermolysis
bullosa-or EB-she had spent the past seven years swathed
in bandages, shielding the painful, blistering wounds
that covered her body.
Although EB is not contagious, most patients lead a
solitary existence. EB is painful, disfiguring and fatal,
typically claiming the lives of patients before age
30.
For these children, a week at summer camp is not only
a reprieve, it's a chance to live for one week as a
child, not a patient.
The National Association of Children's Hospitals estimates
that 18 hospital-sponsored summer camps are in operation
across the country for children with health problems.
A variety of camps are independently run by nonprofit
organizations. Children come to these summer camps with
asthma, AIDS, diabetes, cystic fibrosis and other health
conditions. Some are dependent on wheelchairs and ventilators.
They rely on volunteer physicians, nurses and other
medical professionals for their care.
Mary Bernstein, RN, a clinical nurse at the University
of California, San Francisco's Psoriasis and Skin Treatment
Center, is one of many nurses across the country who
has spent part of her vacation volunteering at a summer
camp.
Assuming a role that is half camp counselor and half
clinician, Bernstein spent a week in August at Camp
Wonder, a retreat for children with rare skin diseases.
The camp is on grounds provided by the Taylor Family
Foundation in Livermore, Calif.
Founded two years ago by Francesca Tenconi, a Walnut
Creek, Calif., teenager who was diagnosed with a potentially
fatal skin disease, Camp Wonder provides children and
teens with the opportunity to experience outdoor fun
and make new friends. Out of the 60 children who attended
Camp Wonder last summer, about 30 had EB.
"Our job as medical professionals is to offer
these kids a week of distraction," Bernstein said.
"We try to keep them so busy and so excited that
hopefully they can focus on something besides their
illness for once in their lives."
Most evenings, staff fall into bed well past midnight
after a grueling day that includes changing the bandages
on the children's blisters, a process that often can
take up to three hours. Some children are administered
morphine shots to reduce the torturous pain caused by
their EB blisters.
"Working at Camp Wonder is the most exhausting
and rewarding job I've ever had in 34 years of nursing,"
Bernstein said. "The experience changed my life
in ways that I never imagined. I've already made plans
to volunteer again this summer."
Three thousand miles away, amid rural Connecticut's
hills and dense woods, is a camp for children with cancer
and serious blood disorders.
Actor Paul Newman founded The Hole in the Wall Gang
Camp in 1988. Today, more than 1,000 children aged 7
to 15 come to the camp from all over the world.
The camp has four paid summer staff nurses and a full-time
director of nursing, who works at the camp year-round.
"We are always in need of pediatric nurses and
those with specialty experience related to the diseases
we serve," said Karen Molloy, director of nursing.
"In addition, we're always on the lookout for nurses
with various skills and a desire to volunteer with us."
Nurses at The Hole in the Wall Gang Camp find themselves
part of the active camp team. They are encouraged to
get to know the campers and join them in a wide range
of recreational activities.
"Our goal is to provide excellent medical care
and an invisible medical presence," Molloy said.
"This is a place where the kids can feel safe and
cared for from a medical standpoint, but are allowed
to let their medical needs fall to the background while
they have fun."
For Carrie Cady, RN, a pediatric nurse at Children's
Hospital and Regional Medical Center in Seattle, attending
camp is as much a part of her life as nursing.
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