A Camp just for kids like them : Cystic Fibrosis Victims Find Some Normalcy and Friendship at CHOC’s Mountain Retreat

Back home in Costa Mesa, Sam Couch has friends. But this week, at a camp deep in the mountains north of Los Angeles, he is making real friends. Friends who understand why he’s slighter than other growing boys, who know what it feels like when his chest tightens and he can’t stop coughing.

Friends like Allan Shilling of England, who also suffers from cystic fibrosis, a fatal disease of the lungs and digestive system.

Hanging out with his new British chum in front of their camp’s dining hall, Sam, 14, told why he was at camp for his fifth summer in a row.

“Everybody here understands what you’re going through,” he said, throwing a glance at his buddy. “You don’t have to explain it to anyone.”

Nor do any of the other 87 campers at the Cystic Fibrosis Summer Camp of Southern California. Organized by the Childrens Hospital of Orange County, the camp is mostly populated by CF patients from the county. But almost half the campers come from other areas of Southern California, and several are from Nevada and Arizona. And this year, for the first time in the camp’s 17-year existence, 12 campers are from Britain.

But no matter what the kids call home, camp organizers say, the camp’s mission is the same: to provide a typical summertime experience while allowing campers to share the frustrations and hardship that come with their disease.

“When we cough here, it all sounds the same,” said Michelle Olson, a 22-year-old counselor from Leucadia who has CF herself. “We all have that in common. It’s a bond for us.”

Katie Lauriha of Arcadia, 15, who has been coming since she was 10, said the camp “motivates you to stay over the year so you can come back and see everybody.”

Cystic fibrosis is an inherited, progressively degenerative disease that leaves a victim’s lungs with a mucous buildup and a chronic infection, which eventually destroys them. In addition, the pancreas of many CF victims is unable to secrete enzymes to digest food.

In Orange County, about 125 people suffer from CF, said Dr. Dave Hicks, a CHOC pediatrician and one of the camp’s physicians. Nationwide, he said, the number is about 17,000.

While the life expectancy for CF victims is rising slowly, few live past their 20s. The CHOC camp, held at various locations around the Southland each summer, this year is at Camp Colby in Angeles National Forest. Campers are 6 to 18 years old.

The camp, which ends Saturday, is run by a foundation established by the hospital. According to Stephanie Frost, a CHOC nurse and a member of the camp’s board of directors, this year’s budget is about $18,500, almost all of which goes toward food, arts and crafts supplies and rental for the camp, which is owned by the Methodist Church.

The money mostly comes from donations by individuals, businesses and civic organizations. Moreover, the camp’s 40 counselors, some of whom are former campers themselves, and 10-worker medical staff are unpaid volunteers.

Because of those donations, the campers are charged just $5 for the week’s stay.

Most of those at the camp--such as Allan and Sam--look and act healthy. Several, though, are sicker and less mobile. Patrick Saunders, a 12-year-old from North Hollywood, is one of 11 campers this year who needs assistance from an oxygen tank to breathe.

The campers’ medical needs make a day at the camp different from other camps. A half-hour before each meal, a “meds” bell rings, signaling campers to a cabin where various medicines and enzyme tablets are dispensed.

And several times a day, the campers undergo a therapy called pounding, where a staff member holds a camper in eight different positions and for 30 minutes pounds lightly on the lungs to loosen mucous so that it can later be coughed up.

Other than the medical routines, though, the camp’s activities differ little from those at other camps: arts and crafts, hiking, swimming and nighttime campfires. The important thing, Frost said, is to let the children go at their own pace.

“We allow for the limitations of the kids,” she said. “They’re not pushed into doing anything they can’t do.”

But there’s little that Elizabeth Kaup, 8, of Anaheim Hills won’t do. Elizabeth, who counselors say is the camp live wire, said she comes to camp to “see my friends, play around and kiss the boys.”

Melanie Stuart, a friend of Elizabeth’s and a healthy-looking 12-year-old from London, wasn’t sure what her limits were when she came to the camp. “I’ve never camped before,” she said, echoing several others from England.

The Britons spent the week before camp staying with various CF families in Orange County and taking in the area’s sights, including Knott’s Berry Farm and Disneyland.

At the CHOC camp, the British have a chance “to come over and meet other children who have CF,” said Jackie Francis, a pediatric nurse from London accompanying the group to America. “We don’t have (CF) camps over there.”

The camp has made Allan, a 15-year-old from just outside London, feel blessed that despite CF he can function there with little difficulty.

“You see other people who have it (CF) worse,” Allan said. “It makes you look on the bright side of things.”

A strong psychological lift also occurs, according to Dr. Hicks, when the children can look up to the dozen or so counselors who themselves are afflicted with CF.

“They realize when their buddy dies that life doesn’t end,” he said.

“They’re pretty mature kids,” added Dr. Paul Labinsky, another camp physician. “They grow up fast when they’re in and out of the hospital and their friends die.”

Sam of Costa Mesa said he has had 10 friends die of the disease. “What do I do?” he asked. “I just try to move on.”

The campers, in fact, confront their friends’ deaths one night during each camp session. A memorial campfire is held on the camp’s final evening, which this week is Friday. The names of those who attended the camp the previous year and died in the interim are read aloud. Songs are sung, and sometimes a prayer is offered.

Bob Flanagan, 33, a counselor from Hollywood and a CF victim himself, remembers the first such memorial campfire 16 years ago.

“The first year we did it, the emotion of it hit us by surprise,” he said. “We all stood around the campfire and cried and cried.”

Such experiences humble counselor Linda Schneider-Tasse, a unafflicted teacher from Downey, and keep her coming back.

“It’s incredible,” she said of her week in the woods. “I mean, these kids have so much more to worry about than we do.”

CYSTIC FIBROSISFACTS

Victims: Afflicts about 17,000 people in the United States.

Mortality: Incurable. Victims seldom live past 20s.

Progression: Hereditary and present at birth, although often not detected until early childhood. Certain cells secrete large amounts of thick mucous, which usually accumulates in the lungs and the pancreas, blocking ducts. Victims usually have difficulty breathing and digesting food completely. Many die of chronic, low-grade infection that destroys lungs.

Diagnosis: Detected by testing for large amounts of salt in perspiration, saliva and tears.

Treatment: Antibiotics for chronic respiratory infections. Digestion improved with animal enzymes taken in pills before each meal.

Clinics: CF clinic at Childrens Hospital of Orange County is one of about 125 such centers in the United States. It treats about 125 CF patients, about 20 from outside the county.

Prospects: Dr. Dave Hicks, CHOC pulmonary specialist, said average age of the hospital’s CF patients is rising and now about 19 years. CHOC’s oldest CF patient is 42.