By Founder of Camp Heartland

Excerpted from "A Journey of Hope: Inspiring Stories of Courage and Unconditional Love" by Neil Willenson and the children of Camp Heartland, a community of support for young people affected by HIV. Ryan was Jonathan Swain's best friend.

In the fall of 1992, I’m on the phone with a soccer coach from my hometown of Mequon, Wisconsin. And I’m angry. Even though he is legally entitled to play, the coach refuses to allow my 7-year-old friend Nile Sandeen to join the youth soccer league. His older brother can pay, but not Nile. Nile has AIDS.

“We’re not equipped to deal with this child,” the coach says. “What if there’s an accident, a blood spill?”

“Youth soccer is not a contact sport,” I tell the coach. “There aren’t going to be any massive blood spills. And besides, you have no idea who is HIV positive and who is not. All you have to do is follow universal precautions…”

Nile was infected with HIV at birth through his mother, Dawn Wolff. When Nile was in kindergarten, his mother went public about their HIV status. She no longer wanted to live behind the veil of secrecy. But sadly, the family saw discrimination raise its ugly head again and again – discrimination based on fear and just plain ignorance.

***

In the summer of 1991, I returned from summer camp and was at my parents’ home one day, walking through the house, when I tripped over a stack of newspapers. I looked down at my clumsy feet and noticed a headline from the local paper: “AIDS hysteria: Oriole Lane parents fear for children’s safety.”

It sounded as if a monster was on the loose. I sat down and read the article. It was a story about Nile. I was outraged. How could my seemingly well-educated neighbors be so misinformed and hurtful? The article really hit home. I had spent so many hours that summer reading to dozens of children about this disease. I recalled the pledge I made with the campers each week. With that in mind, I called up the family just to let them know I wasn’t afraid of them, and that there was somebody in the community who did care about them.

***

This got me thinking: If Nile was badly treated for having HIV, there must be other children like him who were singled out too. Who do these children turn to for support? Where do they go to get away from the cruelty and prejudice?  Clearly, these children needed a place of openness and warmth where they could share their feelings as well.

As Founder and CEO of Camp Heartland, my vision has remained constant over the years: we want to provide kids who have been affected by HIV and AIDS with a place of total acceptance, a refuge from the judgment and isolation that they face every day, a retreat from the fear of the future, a safe haven where they can be themselves, where they can have fun and make friends. Not only does Camp Heartland have the typical summer camp activities, we also offer HIV discussion groups where kids can share their secrets.

In the 12-year-history of Camp Heartland, I have seen these amazing stories unfold before my very eyes.

Meet Ryan and Jonathan, two of the 2,000 — two boys with AIDS who I met in our very first year. Although they are just two of the many children who have attended Camp Heartland, their stories illustrate the courage, struggles, and hope of all our campers.

Ryan and Jonathan grew up to become best friends and Camp Heartland regulars. But as you  will see, the virus affects each person in may different ways. And in the case of Ryan and Jonathan, AIDS delivered vastly different outcomes. 

Click here to learn more about Camp Heartland.

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