Camp With A Difficult Difference The Aids Virus Is The Common Thread At Camp Dreamcatcher. The Lives Of All The Campers Have Been Affected By It.

Posted: August 12, 1999

DOWNINGTOWN — Resting in a corner of the arts-and-crafts cabin, Alex Figueroa, 7, pulled up his Bugs Bunny T-shirt to show a brown Beanie Baby that he was cuddling in the hope of making the stomach cramps caused by his HIV medication go away.

``I wasn't feeling very good, so I put Remy there to make me better,'' said Alex, or ``Macho'' as the counselors at Camp Dreamcatcher call him. ``We're going to play football later, and I have to be ready.''

Alex, a normally rambunctious second grader who lives in Perth Amboy, N.J., is one of 32 children ages 5 to 13 attending a weeklong camp who have tested positive for HIV, the virus that causes AIDS.

The other 40 campers, some of whom traveled from Virginia, New York and Delaware for the chance to let their hair down and romp with other young people grappling with the disease, have family members who are infected or who have died.

For this year's camp, organizers extended the term by a day and accepted 20 more children because of high interest. Nearly 70 volunteer counselors and nurses run the camp, which costs $78,000 to operate. The children attend for free.

While Alex is not seriously ill, the daily regimen of 17 pills and liquids his doctors have prescribed can make him feel sick, he said.

``My mom said that if I don't take my medicine, I will maybe die,'' he said softly, hiding his face between his knees and folding his arms over his curly brown hair at the mention of AIDS. ``She said it would make me feel better. But sometimes it makes it worse.''

At first glance, Camp Dreamcatcher seems like any other summer camp. Laughing children land cannonballs in the pool, make horrified faces at the bugs in the showers, and skip to scavenger hunts holding hands.

But listening to campers' conversations and noticing nurse Ellen Sheehan's struggle to get the youths to down dozens of pills at dinner makes clear how AIDS has affected their lives. Here, children discuss virile loads, ``meds,'' and transmission methods along with the Backstreet Boys and Pokemon.

Patty Hillkirk, a Kennett Square psychotherapist, organized the camp four years ago because she wanted HIV-infected and affected children, initially just from Pennsylvania, to have the chance to meet other children like themselves and talk openly about AIDS.

Camper James Ellerby, 12, from the Lehigh Valley, said having the chance to discuss his illness with children like himself has made his condition easier to accept.

``You feel free to be yourself here,'' said James, who takes 15 pills at a time - most of which are an inch long and as thick as his thumb. ``You don't have to worry about walking down the street and having somebody say, `There's the little AIDS boy.' ''

Kim Mayer, a 19-year-old volunteer from Cherry Hill, said hearing admissions such as this makes her want to coddle the campers, even though Hillkirk admonished everyone to treat them like typical young people.

``They don't come here to be sighed over, so I try to treat them normally, even though I want to protect them,'' she said.

Counselor Taj Brown, who has volunteered for three years and now visits campers at home in the winter, said no amount of training can prepare a volunteer for interaction with infected children.

``It can be really upsetting,'' he said. ``I haven't learned how to disassociate myself from this yet.''

James, whose sister recently died of AIDS, said the five nurses who volunteer to dispense medication and quickly bandage the smallest of cuts to prevent transmission are one of the best aspects of Camp Dreamcatcher. He likes to tease them, he said.

``It's fun to gross them out by taking my pills all in one gulp,'' he said, smiling. ``One nurse looked like she was going to faint when I did it.''

Watching James take his pills ``cowboy style'' is not that upsetting, said nurse Suzie Long. The distressing part, she said is that a 12-year-old is so accustomed to consuming them that he barely needs water to wash them down.

``It's not like you're dealing with regular kids here,'' Long said, sifting through stacks of zippered plastic bags crammed with prescriptions. ``Their whole day is pills and pills and pills.''

Nurse Helen Macchiavelli said most children at the camp are dealing with a lot more than just HIV. Many of the campers have lost one or both parents to AIDS and have been bounced from one foster home to another. Others live in poverty.

According to the state health departments in Pennsylvania and New Jersey, where most of the campers live, 983 cases of pediatric AIDS were diagnosed between 1980 and Jan. 31, 1998. Of those, almost half the people have died. Nearly 8,500 U.S. children younger than 13 have been diagnosed with AIDS since 1981, according to the Centers for Disease Control, and 4,788 have died.

Experts say infected children can live well into their 20s thanks to new drug therapies that have made the disease a chronic but manageable sickness for many. Almost all children with HIV are infected by their mothers.

``We've seen dramatic increases in survival,'' said Dr. Patricia Flynn, who specializes in pediatric HIV at St. Jude Children's Research Hospital in Memphis, Tenn. ``But it isn't without cost. Medications all have serious side affects like diarrhea, fatigue and abdominal pain.''

The children at Camp Dreamcatcher are at a critical stage in dealing with HIV, Flynn said, because many are at the age when the seriousness of the disease is just starting to sink in.

``Most kids don't start really understanding the nature of their illness until they are 9, 10, 11 years old,'' she said. ``Even then, some parents are reluctant to talk about it because a diagnosis of HIV reveals something about the family.''

Ricardo Morales, 14, said AIDS is almost never discussed at his home in Lancaster, even though his father died of it when he was 10 and his mother is succumbing to it.

Ricardo, a soft-spoken ninth grader who likes to fish and play video games, has been coming to Camp Dreamcatcher since its inception. Since he is too old to be a camper this year, he is training to be a counselor.

He said the camp is his only chance to discuss HIV without worrying about being teased. Talking to other children who have lost parents makes him feel better about his uncertain future, he explained.

``I worry about what will happen to me, about where I'll stay, and who will take care of me when she dies,'' he said. ``Coming makes me think it'll be OK somehow.''

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