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Time Of Their Lives

3 minute read
Ron Stodghill II

“It feels terrible to have AIDS because my tummy hurts a lot, and because if my friends found out, they wouldn’t play with me anymore.” –TANYA, 6

No one thought HIV babies would live long enough for anything, let alone summer camp. But there are now more than 10,000 children in the U.S. infected since birth with the AIDS virus who have grown up desperate for a chance to get away from the insularity of their illness. A lucky few find that reprieve for a week every summer at Camp Heartland, where they escape their outsider status to enjoy the simple pleasures of community.

Set on 80 acres of woodland in Willow River, Minn., Camp Heartland was started in 1993 by Neil Willenson, then 31, after he saw how Nile Sandeen, then 5, born HIV-positive, was mistreated. “Parents wanted him to have his own isolated seat on the school bus, and even his own bathroom at school,” recalls Willenson. He made it his mission to create a summer camp that would offer the Nile Sandeens of the world a week of “normal childhood” during which they could experience fun like ordinary kids before they died. “I predicted I’d lose them all, one by one,” says Willenson, whom campers call “Noodles.”

He never expected Nile or Guadelupe or Jessica or any other campers from those years to defy their early odds and still be around today, healthy enough to work as camp counselors. Of 1,500 campers since 1993, just 48 have died. Medical advances that began with protease inhibitors in 1996 and now include an array of aggressive treatments have lengthened the lives of HIV-positive kids, though the long-term effects remain unknown.

“You want to stop taking the medicines and stop doing all of the other stuff, but if you stop taking the medicine, you could die. So you can’t stop.” YOLANDA, 13

The drugs that prolong these kids’ lives are the outward sign of their invisible illness. The Spartan infirmary in the main cabin is known as Club Meds. Each day as the 80 campers fish, play basketball, paint or make lanyards, a team of volunteer nurses sit around a table on which hundreds of pills are lined up like jelly beans. If only they were. In a harsh reminder of just how different this camp is, the nurses carry those pills to the camp’s 10 cabins two to three times a day. Some kids must pop as many as 30, which can inflict hours of nausea, dizziness or nightmares that make sleeping impossible. Smaller kids have trouble swallowing horse-pill-size tablets designed for adults. Liquid meds taste awful and can induce instant vomiting. Meds time often provokes a struggle; it’s one thing these kids can rebel against. Some bury their medicine in sofa cushions or flush it down the toilet.

Yet the pills have given the kids a future, and many are planning theirs. Stacey, 14, who is HIV-positive, says she wants to attend Willenson’s new teen retreat program for HIV and AIDS kids ages 16 to 21 who need to learn self-sufficiency. Her long-term goal is to be a lawyer. But for now she savors her rich life of school, cheerleading, volleyball and dating back in Dundee, Mich. “I’ve had my heart broken a lot, but this camp helped educate me so I can go out and educate others,” says Stacey. “That’s what it’s all about.”

For more pictures, plus interviews, go to time.com/heartland

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