Camp-Goers Use Fun to Ease the Pain : Sickle Cell Victims Battle to Spend the Summer Like Ordinary Kids

At 7:30 a.m., Lazy W Ranch in the peaceful hills of San Juan Capistrano started to wake up.

A few children eagerly emerged from their cabins and trotted over to the swing set. Others materialized at the tetherball pole. The little boys of Cabin 6 scattered onto the playground en masse, followed by the little girls of Cabin 3, and then more boys and more girls--until all 115 children had gathered together in, seemingly, one big giggle.

“Line up for breakfast,” ordered the counselors, admirably cheerful and energetic for such an early hour. “Slow down! No running!”

It looked and sounded like any other camp--except that some children hobbled toward the dining hall on crutches, or were swaddled in heavy jackets although summer heat already warmed the morning air.

Yet the feisty bunch occupying Lazy W Ranch this week are no ordinary campers. Underneath their excited smiles, they share an often invisible and sometimes debilitating illness: sickle cell anemia.

The Sickle Cell Disease Research Foundation of Los Angeles has set up camp every summer for the past two decades, inviting children ages 6 to 14. Of the 55 camps in the United States for victims of sickle cell anemia, the Los Angeles area’s is the oldest and largest.

“Here, the kids can see that they’re not alone,” said drama instructor Brynndah Turnbo, a Riverside teacher who annually volunteers her services at the camp.

More than 50,000 Americans battle sickle cell anemia, a hereditary condition that predominantly strikes black people. The disease causes normally disk-shaped red blood cells to take on a half-moon form.

Victims of sickle cell anemia fatigue easily and frequently suffer painful circulatory disorders. Twisted cells can cause a “logjam” in the body’s small blood vessels, blocking the flow of blood to vital organs and extremities.

“You hear kids asking each other, ‘Where do you get pain? What do you do about?’ ” Turnbo said. “They start to realize that they’re not so bad off, that this is just something they have to deal with.”

Extra health precautions must be taken at the camp. Children with sickle cell anemia cannot tolerate extreme swings in temperature, therefore wear long-sleeve shirts even in 80-degree weather. They also are prone to dehydration and must drink liquids continually.

“We had a little accident,” one counselor matter-of-factly said to another as he accompanied a boy to his cabin.

“You have to keep them pumped full of fluids,” said counselor Byron Hopson. “So they need to use the restroom a lot, and there’s some bed-wetting and accidents.”

Although undersize for their ages, most campers appeared to be robust, active youngsters.

Santa Ana sisters Shlivias and Olivia Williams, along with their Huntington Beach cousin Latina Gaffney, made a pretty trio of typical teen-agers--double-pierced ear lobes, trendy clothes and all.

The 12- and 13-year-old Orange County girls were in the process of sculpting papier-mache masks one recent camp day. “I like to come here because we learn fun things we don’t learn in school, like arts and woodcraft and dance,” said Shlivias, a student at Carr Junior High.

Sickle cell anemia affects its victims in varying degrees, affording some with long lives and relatively good health, while menacing others with serious maladies.

But even in the most devastating cases, counselors treat campers with casual geniality rather than pity.

“Hey, Dorian, let’s show off the special handshake we do,” said an ailing boy’s counselor, and the two “gave each other five.”

Dorian Holbert of Compton almost didn’t make it to camp this summer. His hips were hurting more than usual, forcing him to resort to crutches. But at age 14, this is the last year he can attend the camp, so he was determined to ignore such setbacks.

Had he been thinking about camp all spring? “No, I’ve been thinking about girls,” replied the diminutive teen-ager, draped in a coat.

“What’s great is to watch how his buddies help him,” confided counselor Ron Watson, here from Arkansas to try out for the Rams football team. “He’s got to be in pain, but he never shows it.”

“If you could bottle Dorian’s attitude, you’d have the best medicine in the world,” said Cage Johnson, one of the six doctors stationed at the camp’s infirmary.

“We’re prepared to handle any emergency,” said Johnson, a hematologist and professor of medicine at USC. “But mostly we just get routine camper injuries--sprained ankles and what have you.”

The camp gives youngsters with sickle cell anemia a chance to compete against and socialize with their physical peers in such activities as archery, swimming, dancing and gymnastics. “If you’re the first to tire out while playing a game, here you know it will be only a few more minutes before someone else does, too,” said Johnson, who has volunteered at the camp for 15 years.

“The disease causes delayed puberty,” he added. “But at camp, you can feel you’re not the only person who has these problems.”

A week away from home also gives the children a sense of independence. “It’s quite common among parents of children with chronic illness to overprotect,” Johnson said. “They tend to restrict their kids’ activities, education and goals. They are afraid to let their children out of their sight. But that doesn’t do the kids any favor; they need to prepare for adult life.”

On the first day of camp, parents become more teary-eyed when making their goodbys than do their children, said foundation spokeswoman Sherelyn Roberts. “We tell the parents not to call here checking up on their kids, or else they’d be telephoning every hour,” she said with a laugh.

Many of the children attend camp summer after summer, for as long as age and health allow. “I’ve had the same kids for four years,” said counselor Hopson, pointing at his troop of 10-year-old boys. “As they grow, I grow. We’re like a family. I’ll stick with these kids until their last day, and then I’ll start over with a new group of 6-year-olds.”

Not all children can return, however. On the average, about two campers a year die between sessions. “Our hearts are always breaking,” Roberts said.

More than 50% of children who suffer sickle cell anemia come from low-income families. “A little boy arrived here this week wearing tennis shoes that were too small for him,” Roberts said. “We went out and bought him a new pair.”

With help of corporate sponsors, the foundation pays the $500-per-child cost of its camp. Although currently operating at full-capacity, camp organizers have never turned away a youngster.

This year, Kraft Foods donated 7,200 bottles of fruit juice to campers, and Thrifty Drug Stores supplied toiletries. Other sponsors include Toyota Motors, 7-Eleven Food Stores and the Los Angeles Times.

Likewise, the camp depends on faithful volunteers--counselors, instructors, doctors, nurses--who take a week out of their lives every summer to lend a needed hand.

“It sounds corny, but this is my fountain of youth,” said camp administrator Charles Young, who has volunteered for nine years. “Being with these kids keeps the little boy in me going. When you give of yourself, the rewards you get back are priceless.”