Ten-year-old Shamir excitedly described all of his favorite activities at Willow River's Camp Heartland.

Newsletter signup for email alerts

Swimming is a big one, said the Queens, N.Y., resident, but basketball is tops.

"There is a basketball court where there is a hoop just right I can dunk on," he said.

In his third summer at the camp, Shamir began attending "because my grandma wanted me to be more active."

He was one of about 70 kids at One Heartland's Camp Heartland this week, designated for kids living with or affected by HIV/AIDS. Since it began in 1993 it has served about 12,000 kids. Started as a one-week, one-time camp, it's celebrating its 25th summer, and has expanded to include weeks for kids experiencing homelessness and diabetes, and for kids identifying as LGBT.

Camp Heartland was founded by Mequon, Wis., native Neil Willenson, and stemmed from a friendship Willenson formed with a 5-year-old boy named Nile; a boy who was ostracized in Mequon by families who didn't want him attending kindergarten at his school because he was HIV-positive.

Josephine, 13, of Los Angeles, admires the catch she just pulled out of Clear Lake.
Josephine, 13, of Los Angeles, admires the catch she just pulled out of Clear Lake.
"In 1991, the stigma and misinformation surrounding the disease was really at its pinnacle," Willenson said, and the boy's mother, Dawn Wolff - who went on to become a well-known AIDS activist - spoke out publicly about the situation, which was rare for the era. Willenson, who was in college at the time, came to know the family, which included another boy who did not have HIV.

"I saw that Nile's pain didn't come so much from manifestations of the disease," Willenson said. "His pain came from something we can control: ignorance, cruelty and discrimination. ... It's hard enough to have a childhood illness and be faced with your own mortality. The stigma makes it much worse. That was the impetus to create a safe haven."

And because that experience showed him how profoundly family members were affected by HIV/AIDS, the camp - which moved to Willow River in 1997, has always included slots for kids whose lives are affected by the disease. This week, about half of the campers live with HIV or AIDS and about half have a family member who does.

The camp - a textbook example with lakes, a climbing wall, a pool, archery, crafts and fishing - focuses on giving kids an outlet to be creative and be themselves, many for the first or only time, said Dr. Randy Warren, a retired pediatrician who volunteers at "Club Med," where kids are given their medications and are treated for scrapes and the occasional sprain.

"They can relax because they aren't having to hide or disguise their situation, or put a public face on it," he said.

One of the many campers-turned-counselors, Cassidy Wallisch, 18, said the camp was "the first place I had a chance to feel safe."

"It gave me room to breathe and reassess myself and my life," said the White Bear Lake, Minn., woman, whose life to that point had suffered from instability. "It holds a close place in my heart."

Linnerria, a 13-year-old Chicago resident, is related to someone with HIV. (At One Heartland's request, only the first names of campers are being used to protect their privacy.) In her fifth year at the camp, she's noticed that kids appreciate that it's judgment-free, by campers and staff alike.

"It's like, they so happy because they don't have to think about, 'oh, they have this type of disease,'" she said. "They don't have to worry about people judging them, because there are kids here that are just like them. The counselors, they are like mothers and fathers to us. We all get treated the same."

Barriers eliminated

Campers, who come from all over the country, pay little to nothing to attend, thanks to volunteer pilots from the Kansas City-based Angel Flight organization, monetary and in-kind donations and grants. Paul Molitor of Minnesota Twins baseball fame and Steven Greenberg, a member of the band Lipps, Inc. who wrote the song, "Funkytown," are donors.

About 80 percent of the 500 youth this summer who will attend the various camps live at or below the poverty level, said Stefanie Tywater-Christiansen, development manager for One Heartland, which operates the various camps now offered.

Alina (left), 15, of Colorado Springs, Colo., braids Brooke's hair during a break in camp activities.
Alina (left), 15, of Colorado Springs, Colo., braids Brooke's hair during a break in camp activities.
"The goal is to make sure there are as few barriers as possible to come to camp," she said, and that includes picking kids up at home and offering free flights and anything for camp they didn't bring or couldn't afford. Some kids show up with empty backpacks, she said, so there is a room full of clothes and supplies.

Seeing the different needs kids had throughout the years led to the addition of camps geared toward those needs. Some kids were dealing with incarcerated parents, extreme poverty or living in dangerous conditions, Willenson said, and it was clear that more could be done.

"I see camping as a means to really helping children facing obstacles," he said, with the ability to mix in social work, discussion groups and art therapy.

Along with typical camp activities at the HIV/AIDS-oriented Camp Heartland, which is geared for kids ages 7-15, counselors each night give kids the chance to talk about their situations, if they want to.

"Sometimes it comes up, sometimes it doesn't," said camp director Jill Rudolph. "We have really let that be guided by the campers."

The older campers are offered education about safe sex, building positive relationships and how to disclose their disease to a partner or friend.

Better care, less conversation

Human immunodeficiency virus weakens the immune system and there is no cure. It's transmitted most commonly through unprotected sexual activity and needle or syringe use, and not from casual contact. And while stigma surrounding the disease is still strong, Rudolph said, the challenge has become the lack of conversation, and not necessarily fear of the disease.

"People think it's no longer an issue in America," she said. "It was one of those fancy topics for a while and it's not anymore."

Improved care and medicine have made it a more manageable disease, she said, "but it's still a horrific disease ... we lost two (staff members) this year."

According to the Centers for Disease Control, an estimated 1.1 million people in the United States were living with HIV in 2014, the most recent year data is available. In 2015, youth aged 13 to 24 accounted for 22 percent of new HIV diagnoses.

Willenson sees an improved attitude toward children with HIV, but also more apathy.

"Today's youth have not seen as much suffering related to HIV," he said. "They may let their guard down more. There is an increased onset of HIV among young adults because they did not bear witness to the dying and devastation that we saw when this epidemic started in the 80s and 90s."

He said about 100 campers throughout the years have died from complications related to the disease. Trees planted in memory of those they have lost surround a sculpture of an upside-down teardrop at the center of camp.

HIV/AIDS may be discussed, but the focus of the camp remains on building friendships, trying new things and living in the present.

Before lunch began on Monday, Wallisch's campers stood at the front of the dining hall in a line, and one by one they said their names and what they appreciated at that moment.

"I'm Allora," said the last girl in the line. "And I appreciate life."

Everyone cheered.


How to help

See oneheartland.org for a variety of ways to donate.