A Place to Call Home
Children Living with HIV/AIDS Find Family, Friends & Fun at Camp
by Aimee Swartz, with Ken Gladstone
Four years ago, Veronica, a seemingly healthy thirteen year-old, began to go blind. Her doctors uncovered that her loss of sight stemmed from cytomegalovirus, an AIDS-related infection, and that Veronica was born HIV-positive; her birth parents, she also found out, had died of AIDS. Soon after, Veronica’s family, ashamed of the disease, kicked her out of her home. Later, at the urging of her doctor, Veronica found Camp Sunrise, a camp for children living with or otherwise impacted by HIV/AIDS.
“No one judges me at Camp Sunrise. No one looks at me differently. There is no shame. It’s like it doesn’t matter at all if you have HIV,” says Veronica, now seventeen, who spent her final summer at Camp Sunrise, and now has her sights set on college. “I lost my family on the day I found out about my HIV status but I gained a new home and a new family at Camp Sunrise that accepts me for who I am and loves me unconditionally.”
Camp Sunrise was founded in 1994 to provide Ohio’s children with a place free of the stigma surrounding HIV/AIDS. Since 1994, Camp Sunrise has opened its cabin doors, free-of-charge, to more than 600 children aged six to seventeen. The majority of campers come from marginalized or disadvantaged communities and live at or below the poverty line. Many return summer after summer to be free of the social burdens their disease brings, even if just for one week.
“Although a lot of progress has been made in addressing the stigma associated with HIV/AIDS since the start of the epidemic, the kids who attend Camp Sunrise are still very much affected by ignorance in their communities, their schools, and sometimes even within their own families,” said Cheryl Foley, RN, executive director of Camp Sunrise. “It’s not uncommon to hear them say that they have no friends at home and that they keep a lot of secrets, but that at Camp Sunrise they feel a real sense of belonging and the freedom that comes with being understood.”
Like Veronica, sixteen-year-old Devon, who has attended Camp Sunrise for ten years, is HIV-positive. Though he has lived with the disease since birth, he keeps it hidden from everyone in both his school and the larger community. For good reason, he is unsure how others would respond if they knew the truth. “I’ve seen people act real ignorant, so I don’t tell no one. I don’t got no friends at home. I don’t trust no one. I just ‘do me,’” he says. “But when I come to camp, I don’t have to worry about nothing. We don’t even have to talk about it because it’s all cool.”
Camp Sunrise also serves children who have a sibling, parent, or caretaker living with the disease, or who are grieving the loss of a loved one to AIDS. Tessa, whose mother has HIV and whose father died of AIDS, first came to Camp Sunrise a week after learning her family’s HIV status. “AIDS has torn my family up. I’m not allowed to talk about it though. It’s like this big, scary secret that destroys everything,” says Tessa, a nine-year camp veteran. She knows she can rely on the Camp Sunrise community for year-round support. “They are always a phone call away and I know they will always be there for me.”
At “Club Med,” the tongue-in-cheek nickname for the infirmary, a team of nurses administer antiretroviral drugs and a host of other medications. Aside from that, Camp Sunrise is, in many respects, like any other summer camp. Campers are divided by age into cabin groups, with whom they spend their days swimming, making art, and playing team sports. In the evening, the camp comes together for a campfire, a pool party, a talent show; this year, Camp Sunrise even offered hot air balloon rides.
“To an outsider, it may appear seamless, but every activity and every staff member here is focused on meeting the needs of HIV/AIDS-impacted children. It may not be explicit, but it is, without fail, ever-present,” said Foley, a member of the organization since it began sixteen years ago. “We never forget the population we are dealing with—from their struggles to their joys. This, in turn, allows the kids to not have to be hyper-focused on their own status as they have to be everyday outside of camp.”
During the first several years of Camp Sunrise’s operation, when children born with HIV were not expected to see their tenth birthday, most of the children who attended were twelve and under. That said, as perinatal infection declined and breakthroughs in antiretroviral medication enabled children with the virus to live longer, healthier lives, Camp Sunrise has experienced a notable shift in its demographic. Today, the majority of campers are well into their teenage years.
These adolescents are part of the small but growing population of perinatally-infected youth living far longer than anyone originally expected. As a result, Camp Sunrise’s program has had to evolve to address sexuality, intimate relationships, and other turbulent issues of adolescence in the context of a chronic and still incurable disease. “Just navigating the bumpy road to adulthood is hard enough. These kids are also dealing with HIV and whether there will be food for dinner or if they are safe in their neighborhoods,” said Foley. “We try to help them work through the challenges they face the other fifty-one weeks of the year by providing them with tactical skills like grief management and health-related resources, as well as a strong sense of social support, and a community where they will always be welcome.”
In 2004, Camp Sunrise launched the “Sundogs,” a supportive empowerment-centered group created by and for its oldest campers. In addition to regular camp activities, the Sundogs engage in teen discussion groups, attend sexuality workshops, and join leadership retreats. In 2007, Camp Sunrise further expanded its programming with the creation of a “Junior Counselor” program that allows former campers eighteen years-old and over to return to camp, this time to give back to the community in a new role.
“There is always someone at Camp Sunrise cheering me on and ready to listen to me. This is something I haven’t really experienced a lot at home or in school, but something I get every day at camp,” said Tessa. “I get stronger every year here.”
It costs $200 to send one child to Camp Sunrise, but your donation of any size will ensure that this program continues to be offered free-of-charge to all who need it. Visit www.sunrisekids.org today to make a donation. Next summer is not too far away!
Nicole Giusti is a student at New Canaan High School in New Canaan, Connecticut. As a volunteer at Camp Sunrise, she embedded with a cabin of campers and photodocumented their experiences.
Ken Gladstone is a doctoral candidate in the PGSP-Stanford PsyD Consortium. Currently in advanced clinical training, Ken has worked with children and families impacted by HIV since 1990. His research interests include trauma, political violence, and health psychology.
Aimee Swartz is a writer specializing in health and medicine. She has contributed to the American Journal of Public Health and the Smith Alumnae Quarterly. She has worked with children affected by HIV/AIDS since 1996 and has volunteered at Camp Sunrise for fifteen consecutive summers.