For Kids Affected By HIV, Camp Starlight Is a Ray of Hope

In an old house in Portland was born an incredible new refuge for children infected with and affected by HIV. After meeting so many kids that so desperately needed the freedom, support and services such a place could provide, Katie Hennessy told her sister-in-law about the need she saw for a camp for kids infected with and affected by HIV. At the time, Hennessy, now a licensed clinical social worker at Oregon Health and Science University, was an outreach worker with Oregon and SW Washington Women's Intercommunity AIDS Resource.

"I noticed that there was a fourteen-year-old in one county with almost the same exact circumstances as another fourteen-year-old girl in another county -- both with ill mothers, both contemplating life at such a deep level, both with no one to share that experience with," said Hennessy. "We named the camp Starlight because of the epiphanic moment when we realized that there were not any services for kids impacted by HIV in our state. We realized that we could create a caring community and that these kids would meet each other, have an experience of normalization among each other and not feel so alone."

That old house was where the offices of Women's Intercommunity AIDS Resource (WIAR) were located. The parent organization to the camp was a novel collaborative project of seven orders of Catholic Women Religious (nuns) who identified a need for services for women and children impacted by HIV in Oregon and SW Washington, Hennessy explained.

After researching similar camps across the U.S. and crafting a proposal with the help and support of Executive Director of Women's Intercommunity AIDS Resource at the time, Sia Lindstrom, they approached the local Catholic Camp in town and they let Camp Starlight use the facilities for the first three years of camp.

Only seventeen months passed from inception to creation, and in August 1999, under the direction of what was then called the Camp Starlight Advisory Council, Camp Starlight became a reality. Forty-three kids attended that year and the next year that number rose to more than sixty, "with a waiting list, I believe," Hennessy added. "Our ratio was always one adult to one child at camp with the goal not only being supervision but also attention given to kids who didn't always get a lot of attention due to competing needs in a family."

Creating a Home Away From Home For HIV-Affected Kids

Camp Starlight has moved facilities several times. This year, in fact, will bring it to a new location, its fourth. But when it comes to Camp Starlight, the "where" is not what is important. Ask almost anyone involved with the Camp and they'll tell you the same thing. Camp is about community, a safe, calm, caring community where the only thing the kids have to worry about is having fun.

"Many of the kids that came to camp in those early years were kids who lived in multi-stressed families with a lot of change and a lot of loss. I recall the first year meeting a very young boy who had moved nine times during the year prior to camp. We also had kids for whom there was no place to really call home. For these kids camp brought a healing element. To see the same counselors and friends year after year [brought] a sense that something can be counted on, something stable," explained Hennessy, who served as a clinician at Camp for the first four years and Chair of the Camp's advisory council during the first years as well.

The people who were there describe that first year of Camp as magical with talented people coming in from all over the U.S. to volunteer. Hennessy remembered that, "Kids came from all over the state [of Oregon] and SW Washington, meeting each other for the first time but it was as if they had known each other forever. Infected kids were observed by the medical staff at camp and important communication followed to primary care MDs back home that made a difference. Important connections were made between families and the supporting agency WIAR. Vital trust was built."

Camp Starlight Changes Volunteers’ Lives

The heart of Camp Starlight continues to be the connection between the volunteers and the kids and the magic that this kind of community creates. Those who volunteer at Camp Starlight find themselves forever changed and often return year after year, awaiting the arrival of Camp almost, if not as much, as the campers themselves.

Ebony Frison, 32, the activity specialist for recreation for Camp Starlight, is a case manager. She started volunteering in 2005 and has been coming back annually ever since.

"Camp Starlight is and always will be a second family," said Frison. "Not just 'friends' or a 'chosen family,' but a second family. I have bonded with other volunteers and created friendships that I can depend on. I have learned that regardless of our upbringing or mistakes in life we are all humans with the same core needs: love and respect. Since my first time at camp I have always said that no matter where I live, I will always return to Camp Starlight."

This summer will mark five years for research operations manager, C-J Ford. Ford, 37, who volunteers as a head cabin counselor, said that Camp Starlight had brought a new form of balance to his life.

"Coming to Camp is like coming home after a long trip," Ford told EDGE. "The kids are so excited to be a part of the Camp Starlight experience and everyone who comes together to make this week happen is doing so out of love. That is what gets me through the 51 weeks of the year when I'm in New York City and not in the 'magic bubble' as we have come to lovingly refer to as Camp."

For Scott Weimer, 42, this will be year ten at Camp Starlight. In "real life," Weimer is in marketing and business development for a Pacific Northwest regional law firm. But for the past two years, he has been the 'Music Man,' leading campers in music classes throughout the week, and heading up the morning 'wake-up' band, songs at Circle-Ups, and hosting the camp-wide talent show.

"Being a part of Camp Starlight continues to be one of the most profound experiences of my life," said Weimer. "Each summer our campers teach me something new, about what it means to be a kid in today's world, about the power of community, about discovering new strengths, about being courageous, about the kind of person I hope to always strive to be."

Melanie Smith-Wilusz, 37, a Special Education Teacher who serves as a program director at Camp explained, "At camp we love and embrace everyone. No judgment. Kids get to be kids. They are loved on every single day. It's their time to be free." The summer of 2013 will be Smith-Wilusz's 15th year at camp.

Paul Lewis, MD, pediatric infectious disease physician and Deputy Health Officer, Clackamas, Multnomah, Washington Counties, Oregon is one of the Camp Starlight founders. At one time, he served on the Camp's medical staff. He praised the Camp as, "an annual gathering for children affected by HIV; they are the center of attention not the disease that affects their family's lives."

Camp Starlight Gets New Status As Nonprofit

This year, 2013, is a big year for Camp Starlight, as it will soon have 501(c)(3) status. Because they had not previously applied for such, they relied on other agencies to serve as their fiscal agent, through which they could obtain donations. Cascade AIDS Project (CAP) served as that agent for the past seven years. In order to maintain the integrity of Camp Starlight, the commission has decided to break ties with CAP and become a 501 (c)(3) themselves.

But the new location and the Camp's new status are the only changes to Camp Starlight, which remains steadfast and true to its mission and its campers. Camp Starlight is a place where art, swimming, dance and music fill the days of kids whose days aren't necessarily always so sunny. Through generous donations, Camp Starlight makes sure that the kids who come to Camp have everything they need physically, from clean clothes to warm bedding to balanced meals.

The community of Camp Starlight also makes sure that campers have their emotional and medical needs met too, with a full medical and mental health staff there ready to serve them. Naturally, the counselors are trained to help assure the safety of the kids. It only makes sense since safety is, in fact, one of the cornerstones upon which Camp Starlight was built.

Rebecca Block, PhD is an assistant professor of Medicine at Oregon Health and Science University (OHSU) and the pyschosocial research leader for the Adolescent and Young Adult Oncology Program at the OHSU Knight Cancer Institute. She is also the director of the mental health team at Camp affectionately known as the Twinkle Team.

The Twinkle Team is made up of mental health professionals who are charged with caring for the emotional well-being and safety of every camper and volunteer at Camp Starlight by providing boundaries for sharing emotions in safe and productive ways.

Block shares a story from another of the camp founders, a child psychiatrist known by those at Camp as Rock, about why feeling safe is such a big part of Camp. When Rock was a kid, his older brother used to always sucker punch him in the stomach. So Rock started walking around with his stomach muscles tensed all the time in case that punch was awaiting him around the corner.

The kids who come to Camp Starlight spend most of their lives in fear of that punch, whether literally or figuratively. Will there be enough food tonight? Will they lose their housing today? Will mom's new boyfriend be nice? Will mom be well enough to get me to school today?

"Camp Starlight is the place where everyone, campers and counselors alike, can relax, avoid stigma, and express their emotions without fear of being sucker punched. Ever," said Block.

Almost seventeen years ago, Hennessy had a beautiful idea, and now the children of Oregon and SW Washington infected with and affected by HIV have a beautiful place to call home, a place of community, a place of magic.