Camps for Children with Illnesses on the Rise: Normalcy and Fun Help with Coping and Healing of Disease and Disabilities

by Melora Mayo, R.N., B.S.N.

Carol LeBoeuf will never forget it . . . the day her twelve-year-old son David came running out of the Clara Barton Day Camp in North Oxford, Massachusetts, yelling, “Mom, they’re all just like me!” David, who has had Type 1 diabetes since early childhood and has been attending the Heard Street Discovery Academy in nearby Worcester where he is the only child with diabetes in a school of 260, had made a discovery of his own. There were other kids just like him. And he — and they — could have a serious medical condition, one that is alarmingly on the rise in this country, and still enjoy the carefree summer activities of normal children.

Carol says, “David has always been a serious child. Sometimes he meets girls who have his condition, but rarely boys. At camp he met a counselor named Kevin who also had Type 1 diabetes and bonded with him instantly. He began to relax to the point where he got the ‘Barton Boy Award’ as the most happy camper.”

Carol, too, had a positive experience. As a registered nurse, she had given up working to be on call for David’s school because the Heard Street Academy has no nurse on staff. While David was at camp, she said she felt confident about his safety away from home for the first time since he was diagnosed.

Camp Can Be the Common Bond

Across the country, among families dealing with serious diseases, the camp movement for children with such conditions is on the rise. Whether it’s juvenile rheumatoid arthritis, cancer, diabetes, or lifelong challenges such as blindness, through camping their conditions have become the common bond that helps them to not define themselves by their diseases but to view themselves as kids first.

Major diseases and disabilities burden the childhood of tens of thousands of youth each year. One in five hundred children suffers from either Type 1 or Type 2 diabetes. It is the most expensive major disease known, costing over $100 billion for treatment and its complications. Juvenile arthritis affects an estimated 285,000 children under age seventeen and 50, 000 of them have juvenile rheumatoid arthritis. And, cancer is the leading cause of nonaccidental death among children.

A joyful discovery
In experiencing camp with other children affected by the same condition, David is not alone in his joyful discovery. Claudia Uppendahl, age ten, who has had Type 1 diabetes since she was five and has attended the Clara Barton Camp since she was six, feels the same way: “I feel happy knowing I’m not the only one and that I can be a regular kid. The counselors treat everyone the same.”

Claudia’s mom, Laura, is a single parent who gave up her floral business and moved in with her parents to care for her daughter full time. She says that camp is a place her daughter can be totally herself “while I sit back and relax . . . a total break for me. Also, Claudia learns how to do one major thing for herself each summer. Last year she learned how to give herself an insulin shot in her abdomen.”

Camps for Special Needs Are on the Rise

Clara Barton Camp has served close to 30,000 children during its seventy-year history of managing day and overnight summer camps for girls and boys. To meet increasing demand, it recently expanded its summer programs to co-ed day camps in nearby Worcester, the Boston area, New York, and Connecticut.

What’s going on? Shelley Yeager, executive director of The Barton Center for Diabetes Education that administers the camp programs, explains: “Diagnoses of children with both Types 1 and 2 diabetes are rising astronomically in this country. But a diagnosis is only the beginning. Parents need help in coping. A child and her or his family and friends must learn to adjust to the many changes in lifestyle necessary to enable a child to live as normal a life as possible. Camping is the best way we know to help make that realization happen.”

Currently, according to American Camping Association (ACA) files, there are more than two hundred camps for children with special diseases such as diabetes and cancer. The camps serve those with a range of diseases, including HIV/AIDS, multiple sclerosis, muscular dystrophy, cystic fibrosis, and cerebral palsy. Several of these camps include those with related conditions, such as spina bifida, blindness, and hearing loss.

Camps may be sponsored on a national basis, such as those funded by the Lions Clubs International Foundation. They may also be supported by local chapters of national charitable organizations, such as the Southern California chapter of the national Juvenile Arthritis Foundation, or, as part of a special division within an organization, such as the American Cancer Society’s Camping Center of Excellence.

National/International Associations Bring Camps to Kids

International Diabetes Camping Association
Zula Walters, executive director of the International Diabetes Camping Association, confirms the trend toward greater camp numbers and says today there are more than 124 diabetes camps in America and 110 worldwide. “Our newest board member is from the Republic of Georgia. New camps are even forming in England, South Africa, and Japan,” she reports.

“Children of working parents may need these programs most,” Zula says. Many are latch-key kids who come home from school and, while safe from dangerous streets, watch television, eat junk food, and get little or no exercise.

The Arthritis Association
The Arthritis Association does not yet have a national program in camping. In its place, some local chapters are filling the gap. In Southern California, Camp Esperanza uses another camp’s accredited facilities to hold its annual programs.

Amanda Fleckenstein’s mom, Penny, says attending Camp Esperanza held under the auspices of Camp Whittle, the YMCA camp in San Bernardino, California, has made her eleven-year-old daughter more knowledgeable about her condition. Amanda, who has had juvenile rheumatoid arthritis in her right wrist and ankles since she was six, has also met other children and counselors — some with conditions a lot worse than hers. All are accepted for who they are as people and are not defined by their illness. “My counselor has so many scars on her legs from operations she can’t bend over, so she uses special tools to pick things up. But she’s just great, and we all like her,” says Amanda.

Penny thinks the camp is really good for the parents; some are overprotective and may actually be holding their children back. She sees the need for the camp experience to continue throughout the year, on weekends, and during school vacations to provide children and their families with ongoing support systems.

Lions Clubs International
Lions Clubs International, a time-honored service club since 1917 with chapters nationwide and abroad, has long been raising and donating funds for charitable causes. Their chief mission is blindness prevention. Since diabetes may sometimes lead to loss or diminution of sight, the Lions Clubs’ International Foundation (LCIF), founded in 1968, focuses contributions on diabetes awareness, screenings, and camp activities through its two-year-old program Core 4 in the United States, Finland, and Australia.

Russell Link, director of the Wisconsin Lions Camp in Rosholt, Wisconsin, and informal head of the loosely organized Lions Camps Association, says his Lions camp for kids with disabilities started in 1956. The camp for the visually and hearing impaired, those with mild cognitive conditions, and children with diabetes serves 1400 children a summer. It is free and, as expected, has a waiting list.

Fifteen-year-old Cale Newton has been a star camper there for seven years and a role model for the younger children. Cale, legally blind since birth, loves a challenge. The youngest of six children and the only one with a disability, Cale has been encouraged by his siblings to participate in their play activities from an early age. When he arrived at camp at eight, he decided he wanted to swim across Lion’s Lake, an achievement that his peers regarded as unattainable. Accompanied by a lifeguard swimming beside him and another in a rowboat, he reached his goal and was presented with a “very cool award, certificate, and patch” as the youngest camper to ever to swim across the lake.

Cale’s mom, Carole Benzschawel, says camp has done excellent things for Cale’s self-esteem. He has found his own place and has become a leader to whom the other kids look up. Cale says he would recommend camping to kids with disabilities who are not exposed to outdoor activity. Cale’s favorite camp activity is raising pop-up tents in the woods, starting a campfire, and cooking s’mores. As the camp’s goodwill ambassador, he also gives talks to visiting Lions members.

The American Cancer Society
The American Cancer Society (ACS) runs forty-six camps nationwide under its Camp Center of Excellence Program. Director Sheryl Markowitz describes the camp experience for past or present sufferers of the disease as “a significant therapeutic intervention.” When children who have cancer are diagnosed and treated for this life-threatening illness, she says, they are often removed from their every day circumstances and may lose the ability to interact with their peer groups. Reintegration with other children (at camp) is an invaluable lesson about how to navigate the challenges of relating to other children their age.

Another interesting aspect of the ACS camps is that at any one time, among the 5,000 children a summer who attend, 50 percent may have beaten the diagnosis. Although recovered, they may still have scars or disabilities and being among others who understand and make them feel accepted is an important experience in their steps toward wellness.

All the ACS Camps are free. Bradley McGory, eleven, of Ohio, who was diagnosed with acute lymphoblastic leukemia at four years old and went into remission at eight, started going to Camp Friendship North in Chagrin Falls, Ohio, while he was still ill. At age seven, his mother Dee says, although he was still on medication and feeling its side affects, she reluctantly sent him at the urging of his doctor and staff. “I was frantic, seeing him off for a whole week, and wanted to hide in the weeds and watch him. And the camp management doesn’t want you to phone because a child can get homesick and want to leave. But the nurses were wonderful, and would call me every other day and tell me how he was doing.” In the years since, the McGorys receive an hour-by-hour schedule of camp activities, so they always know what Bradley is doing.

Dee thinks the camp experience has made her son more open to and understanding of others. Bradley looks forward every year to meeting the same children from all over the region, whom he only sees, due to distance, during that time. His and his family’s favorite staff member is Patrick, a counselor whose leukemia is in remission and who has married another counselor. The couple has recently had a child, and the McGory family discusses with them what is ahead for Bradley in terms of college and grown-up relationships.

Bradley enjoys the many camp activities, including fishing, hiking, archery, and the last night special celebration, “Carnival.” He says the camp has made him feel good about himself and happy and thinks other children with cancer would feel the same. In fact, when he has been faced repeatedly with the choice of joining the family on a conflicting vacation schedule, camp has always won. Dee expects him to continue to attend until the age limit of eighteen.

Camps’ Remarkable Influence

One anecdote seems to illustrate best the influence camp has had on children’s lives. Carol, mother of David, relates that the Barton Day Camp experience made her son so confident he developed a science project about diabetes as the invisible disease the following year in school. The project was entitled, “What’s It Like Being a Child with Diabetes?” A photo of normal-looking boys, including him, illustrated it. Underneath the picture of the four was a caption that read, “Which one has diabetes?” The answer . . . they all do.

Melora Mayo, R.N., B.S.N., is health services manager for The Barton Center for Diabetes Education in North Oxford, Massachusetts. She has Type 1 diabetes herself and was a camper at the Clara Barton Camp when she was ten. She is a graduate of the University of North Carolina at Charlotte’s School of Nursing. In the camp’s off-season, she serves on the nursing staff at Hubbard Regional Hospital, Webster, Massachusetts.

 

Originally published in the 2002 November/December issue of Camping Magazine.