Herald: Camp Sunburst ray of hope to children and adolescents affected with HIV
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Camp Sunburst ray of hope to children and adolescents affected with HIV

30 May 2015 12:14am IST
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30 May 2015 12:14am IST

For most people, the idea of a summer camp conjures memories of painting, yoga, crafts, food, fights and late-night mischief. But for Usha, the summers she has spent at various summer/winter camps, the experience was something more: a break from being different.

pio esteves

For most people, the idea of a summer camp conjures memories of painting, yoga, crafts, food, fights and late-night mischief. But for Usha, the summers she has spent at various summer/winter camps, the experience was something more: a break from being different.

 “It’s the one week out of the entire year that I feel normal,” said Usha, who has attended the last three camps organized by Human Touch in collaboration with Positive People and Empower. “It’s the only place I can just be that person I’d like to be if HIV weren’t in my life.”  

Usha was born infected with HIV, having contracted the virus in utero during birth. Though her prognosis was grim, as was that of most babies born in the early 1990s, the introduction of powerful anti-retroviral therapies just years later meant that children like Usha, not expected to make it past kindergarten, had a shot at growing up.

Now 19 years old, Usha is one of thousands of young people who have survived in HIV’s shadow. Physically, she’s endured a childhood punctuated by serious, often deadly infections and suffered various effects of long-term anti-retroviral use, such as a hearing impairment and memory loss. Emotionally, she has grappled with anger toward her mother, who she blamed for infecting her with HIV, and the grief that came when she lost her to AIDS.

On top of it all, Usha has struggled with trusting others with the secret of her HIV status. Fearing judgment, she has chosen to deal with her own unknown prognosis, for the most part, on her own. Except, she says, at Camp Sunburst, where she spent one week each summer for the past 3 years.

Initiated in 2013, in response to the growing number of HIV-positive children in the early-and mid-1990s, Camp Sunburst is one of the few summer camps of its kind. Over the years, it has welcomed upwards of 300 children and youth who are HIV-positive, who have a sibling, parent or caretaker living with the disease, or have lost a loved one to AIDS.  Its goal is simple - to create an environment free from the social burdens so often associated with the disease.

“In the real world you just sort of learn that you have to keep a lot of things bottled up or risk losing people,” says Ashwini Naik, camp coordinator. “At camp, you don’t have to worry about that because everyone is like family.” She further adds, “The children at Sunburst shouldn't need special treatment, and their stories shouldn't weigh more heavily on your heart than those of anyone else whose life has been affected by HIV. Just like anyone else, they should be considered for who they are (no matter how bratty or sweet that may be), not for their HIV status”.

The teens take part take part in leadership and skill building activities to help them with challenges they face outside of camp. They are also encouraged to step outside of their comfort zone and build confidence - be it by performing a skit, engaging in creative art or participating in a camp-wide talent show.

But Peter F Borges, a resident of Sancoale and founder of Human Touch and director of Camp Sunburst says camps like Sunburst are still needed until the cruel stigma that surrounds HIV/AIDS goes away.

Recalling the incident at Rivona last year where HIV positive children were discriminated in school, he says “We live in a world where people still fear HIV, tell AIDS jokes and think you can get HIV by sharing a drink,” he said. “Camp is sadly just about the only place many of these young people don’t have to worry about not being accepted.”

Borges says it’s not just children living with HIV who need a break from the burden of the disease.  “Uninfected children have a lot of anxiety about their family’s health and whether their parents are going to be treated differently at work because of it or if they are going to get treated differently at school because of it,” he adds.

“We try to set them up to succeed year-round, whether that’s working with them to improve their treatment adherence, navigate their sexuality, disclose their HIV-status or apply for a job or college,” Peter said.  

It takes nothing short of a movement to create an environment where children can discuss HIV, if they choose to do so, in a safe and non-judgmental place, free of the weight that the HIV stigma carries. The camp organizers, staff and counsellors work all year to create this singular week of stigma-free, majestic bliss. Each year producing the camp session seems like an almost-impossible task.

From the endless fundraising to making sure that each counsellor understands the gravity of their role, the leadership behind Sunburst Camp works tirelessly to produce the impossible and make sure that each camper has what they need, both emotionally and physically. No matter what shade of bleak the child's background may be (and it can be extreme), the people at Sunburst make sure that there is nothing left to be wanted.

This year the 5-day Sunburst Camp at Collem farmhouse was attended by 61 children, out of which 40 were HIV/AIDS affected children. It was supported by well-wishers and the Society of Pilar.
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