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How a Determined Young Man Built a Camp for AIDS Children (1994)
Written By: Matt Murray / Wall Street Journal
6/1/1994

At 7 a.m., after four hours of sleep, Neil Willenson sweeps through his summer camp, bursting into cabins and hugging children.

Eleven-year-old Ryan Chedester stumbles out of bed, his stack of hair mussed, his eyes half closed. "Ryan, you up?" Mr. Willenson asks. "Hi, Noodle," the boy mumbles, using Mr. Willenson's camp nickname. Mr. Willenson checks his Mighty Morphin Power Rangers watch; he still has to cement plans for a campfire and field trip, and check archery targets and the swimming pool.

It could be any morning at any summer camp. But at this camp, in Blairstown, N.J., half the children have AIDS or HIV, the virus that causes AIDS. (The other half come from families in which a parent or sibling is sick or has died from AIDS.) So Mr. Willenson, who is 23 years old, must also get many of his campers to the infirmary for their AZT and DDI.

At the same time, he's grieving. Adam Russell, a 14-year-old who attended the camp last year, died of AIDS at home in Romeo, Mich., on the first day of camp this year. "My heart broke when I heard about Adam," Mr. Willenson says. But he must be composed. "My job is getting kids to breakfast, making sure they get their medicine."

An activist since his teens, Mr. Willenson has devoted the last two years to getting this camp, called Camp Heartland, up and running. For staff, he has recruited dozens of young people, most of them college students who work for free. They and Mr. Willenson counter the pop-culture image of their generation as "slackers" who care only about their own bitterness and the antics on "Melrose Place." Says Mr. Willenson, "Those are stereotypes from a bunch of 40-year-olds sitting around saying, 'Oh, today's youth.'"

Camp Heartland grew from Mr. Willenson's friendship with Nile Wolff, a boy in his hometown of Mequon, Wis., and his mother, Dawn, both of whom have AIDS.

In early 1993, Nile was squeezed out of a California AIDS camp, Camp Sunburst, because of space. "Even if Nile is going to live to be only 10, he deserves to have a childhood," Mr. Willenson says. So Mr. Willenson, an avid camper and former camp counselor, decided to start his own.

Mr. Willenson was not a novice at charity work or at networking. He founded a charity for homeless at 15 and, two years later, ran an unsuccessful race for the Wisconsin State Assembly. But camp season was just seven months away.

Mr. Willenson spent weeks researching other camps at the library. His father gave him office space, a fax and a phone at his warehousing and trucking company. He called doctors, charities, newspapers, community leaders and companies, seeking advice, staff, funds and publicity. For money, he dipped into his Bar Mitzvah savings and borrowed from family and friends. He packed his calendar with speeches and soon was putting in 16-hour days.

Doctors and AIDS organizations weren't much help. "Within our community and in Wisconsin, there was skepticism about his plans, I think in part because Neil was so young and also because he really did not come with much background in the AIDS epidemic," says Doug Nelson, executive director of the AIDS Resource Center of Wisconsin. "He made real believers out of a lot of people who were wondering, 'Can this fellow really pull this off?'"

Says Mr. Willenson: "There were days when I felt like I had been mugged because people had been so negative and so rude and so condescending because I was 22. Doctors would say, 'There's no way this camp would ever work' and hang up on me."

Undaunted, in four months, Mr. Willenson raised $60,000, half from friends and students who had heard him speak, the rest from companies such as Miller Brewing Co., which gave $5,000, and Harley-Davidson, which donated $3,000. Camp for 75 children was held in August at a rented Wisconsin site.

For medical help, Mr. Willenson relies on volunteer nurses and local hospitals and is looking for a full-time doctor. Problems range from campers not being picked up at the airport on time to young counselors overwhelmed by emotion. Because many young people haven't confronted their own mortality, working with AIDS patients can be especially hard on them.

"These kids may ask hard questions about death, questions that you may not have answers for," says Geri Brooks, a family therapist and founder of Camp Sunburst, a one-week program in Petaluma, Calif., for families and children with AIDS. "It takes a person who is comfortable with him or herself to recognize that it's OK not to have all the answers."

This summer, about 250 children, ranging in age from 5 to 17, will attend Camp Heartland's two week-long sessions. The camp pays all costs, including transportation, on a shoestring budget of $200,000, by taking advantage of discounted camp goods and donated plane tickets and rides.

Long, hot days here start with flag-raising at 7:50 a.m., move on to arts and crafts, canoeing and games of "Capture the Flag," and end late in the evening with a campfire or a dance party. Two, three, four times a day, campers troop into the hot, cramped infirmary for pills or injections of AZT, DDI and other drugs.

At camp, Ryan Chedester can swim, loiter in art class or chase Mr. Willenson and other campers during a water fight. Ryan, a hemophiliac who contracted AIDS through a blood transfusion, takes about 10 different medications as many as four times a day. But here, no one frets when he races around or protests when he wants to lie down.

The second day of camp, Mr. Willenson arranges to plant a red sunset maple for Adam, an avid gardener. Most campers are kept inside eating dinner; their boisterous chatter can be heard in the background while about 15 of Adam's closest friends, including Ryan, silently circle the delicate young tree.

The sky threatens rain as Mr. Willenson begins. "This will go on living for many, many years," he says. "And so will our memories of Adam." One by one, each person says a few words, then shovels some dirt by the tree. When it is his turn, Ryan, looking down, says, "He was my best friend." By the end, many are wiping away tears.

Only Mr. Willenson is smiling. He pats Ryan on the back. Confidentially, he says, "I think Adam likes it."


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For general information about Camp Heartland programs and volunteer opportunities, you can contact us at: helpkids@campheartland.org, (414)272-1118 or (800)724-4673