Happy
Campers
Children with chronic conditions let loose and get the
chance to just be kids as summer camps designed to meet their special
needs
By Linda Childers
June 19, 2003
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.
This summer marks the 17th season that Cady has volunteered at the Stanley Stamm Children's Hospital Camp.
Founded 37 years ago by Stanley Stamm, MD, a cardiologist at Children's Hospital and Regional Medical Center, the camp provides a welcome change of pace for young patients with heart disease and cystic fibrosis.
Stamm founded the camp to give his young patients the opportunity to enjoy the same activities their siblings enjoy at regular summer camps. The cost for the weeklong camp is $75, and scholarships are available to families who need financial assistance.
Cady was recruited as a camp volunteer when Stamm overheard that she had been a Girl Scout counselor and also played the guitar. Cady, who suffers from asthma, rheumatoid arthritis, fibromyalgia and Sjogren's syndrome, also can relate to the campers ailments.
"I work with a lot of children with asthma and cystic fibrosis at the camp. We use our inhalers together and make a game of counting puffs," Cady said.
She is also well-known for playing her guitar before bedtime and singing the campers to sleep.
Children at the camp enjoy fishing, horseback riding and an array of other activities. All children are encouraged to participate despite their limitations
"I remember one summer when a girl with cystic fibrosis wanted to ride a horse and one of the nurses walked beside the horse carrying an oxygen tank," Cady said.
Mixed in with the happy times are the poignant moments. Sadly, many young campers succumb to their illnesses and are remembered by their friends and medical staff, who plant trees at camp in their memory.
Cady, who is fondly known as "The Bubble Nurse" for the wand of bubbles she always carries around her neck, hopes that her zest for life inspires the young campers.
"The children know I have several chronic illnesses but they see me blowing bubbles and acting silly at the camp, and they realize that life can still be good," Cady said.
For more information on volunteering at these summer camps visit their Web sites: