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Illness Doesn't Stop Fun at Camp : Positive Attitudes Stressed for Children With Cystic Fibrosis

July 29, 1986|DOUG BROWN | Times Staff Writer

Todd Hanson's summer camp days were supposed to have ended three years ago, when he was 15. The ritual wasn't coming to a close because the Huntington Beach youngster or his parents thought he'd outgrown camp, however. Todd's doctors believed he was going to die.

"Everybody but me is always thinking I'm going to die," said Todd, who has cystic fibrosis (CF), a fatal degenerative disease of the lungs and digestive system that is inherited.

Last week, Todd, confounding the prognoses of everyone except himself, was back for his 14th straight season at the Cystic Fibrosis Summer Camp of Southern California. The 18-year-old Orange Coast College sophomore was one of 63 CF youngsters who attended the weeklong camp, which ended Saturday.

Todd said he "sometimes" thinks about the fact that CF victims usually don't live beyond their mid-20s. "But I don't let it get me down," he added. "You've got to have the right attitude to fight this thing."

The major goal of the camp, which this year was held in Angeles National Forest, is to help CF children develop positive attitudes like Todd's by showing them they can live a week in the outdoors like normal children, camp founder Bobb Crabb told a visitor last Thursday.

Crabb, 45, is a Seal Beach high school teacher who started the program 15 years ago so Orange County CF children between 6 and 18 could participate in games, crafts, swimming, campfires and singing.

Most From Orange County

The majority of campers still come from Orange County; the camp operates under the auspices of Childrens Hospital of Orange County in Orange. However, Crabb said that youngsters also come from Los Angeles, San Diego and Santa Barbara counties--and from as far away as Las Vegas and Arizona.

The Santa Ana-based organization charges nothing for this week in the woods. It doesn't want to impose additional costs on CF children's families, who are often left financially strapped by medical costs, said Stephanie Frost, a nurse at Childrens Hospital and a member of the camp's board of directors.

The camp's 30 counselors, doctors and nurses are unpaid volunteers. Much of the food is donated by local companies. The $15,000 needed annually to rent different Southern California campsites, buy supplies and pay for transportation, Crabb said, is raised by soliciting donations from individuals, civic organizations and businesses.

"We provide an environment where CF kids can act as themselves by being around other kids who are going through the same physical and psychological things they are," Crabb said. "Here, they don't feel that they're the odd person out--that they're the only people in the world who cough a lot or need aerosol respiratory treatments.

Normally Restricted

"Normally, these kids spend a lot of time in hospitals and are restricted in their activities. Here, we let them roll around in the dirt."

Echoing this view, camp physician Ivan Harwood said: "These kids get strong by being active outdoors like they are here. They have to be physically strong for their bodies to handle the antibiotics and other treatments to control the lung infections they're always being hospitalized for. This is the only way to lengthen their lives.

"Almost as important is the CF kid's approach to life; he's got to have a positive attitude. Not only does he have to be physically strong enough to cough up lung secretions, he's got to be emotionally strong enough to want to do it."

Explaining how camp gives CF children this needed psychological boost, Harwood said, "Here, they lose their sense of isolation--that feeling that 'I'm the only one in my school who has this. . . . I feel so different from everybody else.'

"Being here is like having 60 brothers and sisters because all the campers are taking pills or coughing a lot," Harwood said. "What's abnormal and different in the outside world is normal here."

Because CF children are chronically ill, Harwood, 47, stays at the camp around the clock. A pulmonary pediatrician at UC San Diego Medical Center, he also serves as director of San Diego's Cystic Fibrosis Center, one of 125 such regional centers in the nation that specialize in treating the disease.

Shortens Life

Cystic fibrosis is a progressively degenerative lung disease that shortens a person's life, Harwood said. Because the lungs of a CF victim are defenseless to various bacteria, even aggressive use of antibiotics leaves the victim with a chronic low-grade infection. "Slowly, over a period of time, this chronic infection destroys the lungs," Harwood said.

In addition, the pancreas of a CF victim is unable to secrete enzymes to digest food. "Without being able to digest food, you can't gain weight," Harwood said.

In an attempt to overcome this deficiency, children with the disease take animal enzymes and are required to eat huge amounts of food.

Nonetheless, most CF children have slight builds. "A CF kid will look like he's 9, when he's really 14," Harwood said.

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