03/14/2013 11:42 am ET Updated May 14, 2013

Saving Camp Starlight: Home to Kids Infected With and Affected by HIV

It was only a week. And I was only the dance teacher. But it forever changed me. I'm talking about Camp Starlight, a camp for kids infected with and affected by HIV.

My little sister is on the committee that organizes it. She has been for years. One day, quite out of the blue, I asked if maybe I could go too and volunteer.

"Sure," she said.

"That's it? Sure?"

"Well, I know we need a dance teacher and I know you can do it. So, sure."

And that was pretty much that. I put together a routine and packed my duffel and off I went to camp. The first two days were training, some of it gut-wrenching.

We talked about what to expect. We talked about the realities of HIV and AIDS. We talked about everything and yet nothing could have prepared me for the week to come.

The kids were amazing. They could not have been more thrilled to be there. Camp Starlight provides them with the perfect week. Lots of supportive and present adults. Lots of understanding friends. Lots of nourishment. And no stigma. HIV is what brings us together at Camp Starlight so it can't break us apart.

We all know the deal and so it's no big deal.

My sister tells me that for some of the kids, camp is the best week of the year. Not all of their home lives are ideal. As the dance teacher, I knew only what the kids chose to tell me.

As a human being, I could tell that some of these kids lived in situations in which no kid should have to live. Absent parents, drugs, violence, sex, you get the idea. But for that week, they could be exactly who they were and get exactly what they needed.

There were three hot, hearty meals a day and a safe place to sleep. There were activities from arts and crafts to a ropes course to everything in between. And there was an amazing cabin filled with clothes, as well as bedding and toiletries and whatever else the kids might need.

They called it Kit's Kaboodle. It was started because some kids used come to camp with nothing or at least not any of the things they need for camp. It's run by an incredibly sweet, generous woman named Kit (hence the name) who makes sure all the kids have what they need without making any of them feel needy.

The kids "go shopping" at the Kaboodle and feel spoiled instead of neglected. All year long Kit and others work to be sure the Kaboodle will be stocked. It's a metaphor really for camp in general, people working all year long "stocking" up on compassion and joy and selflessness to make sure Camp Starlight is a week of, "Yes!" and "We have that!" and "Of course you can!" and "I'm here. I am right here."

There's a full medical staff and an infirmary at camp too that we affectionately call Club Med. A place where kids can get their meds at the "drive-thru" and not have to lie that they're going to take their "asthma meds." Dr. Sarah, Nurse Sandy, and Nurse Janet are always on call to hand out meds or deal with whatever medical needs arise.

And they do it from a place decorated like a vacation spot instead of a hospital ward and they do it with a "here to serve" smile instead of a "what do you want from us now" attitude. They make all things medical seem like no big deal even when in "real life" those things tend to be the most all-consuming thing in their world.

For one week, the world really was a better place, a happier place, an easier place.

I cried the whole way home from camp and for weeks after every time I heard songs that had played again and again throughout the week. I learned to pacify myself the same way I knew all of the other counselors and the majority of the kids did too. I thought about the summer to come and how equally amazing it would be.

That is, until I heard the bad news that Cascade AIDS Project (CAP) was trying to usurp the program from the very people who created it.

You see, Camp Starlight has always been its own entity. It began with a dedicated group of volunteers and remains run by a dedicated group of volunteers. Some of the people involved in Camp Starlight now have been there from the beginning.

Seven years ago, Camp Starlight agreed to partner with CAP. This year, Camp Starlight had to end that relationship in order to maintain the integrity of Camp and protect donations intended for Camp.

The break-up is sad. But it's exciting too. Camp Starlight recently incorporated as an Oregon nonprofit corporation and is in the process of applying for its own 501(c)(3) status.

The relationship with CAP was designed to be mutually beneficial. When it no longer was, Camp Starlight took leave. CAP was to be a Steward of Camp and to behave in the spirit of Camp. Instead, they wanted Camp to fit into a tidy box that matched all of their other programming. They wanted to take the heart out and put the corporate in.

But CAP has sadly decided to not play nicely. Both "sides" have lawyers and no one was to do anything until things were worked out.

A Memorandum of Agreement is in place and things were to be decided based upon it. But CAP decided they were immune to the rules, making phone calls, sending emails, moving forward before things have been settled.

They bullied the physical camp that rents its facilities to Camp Starlight each year into allowing them to empty the giant storage unit in which the camp graciously allows Camp Starlight to store donations and camp supplies year to year.

Those donations were made to Camp Starlight and those supplies were purchased with funds given to Camp Starlight and CAP has taken them.

They have also started their own camp, a separate camp, a completely new camp. But they are publicly announcing that it is Camp Starlight simply under a new name and that the original Camp Starlight is a new operation being cobbled together by some rogue volunteers. They're trying to fool people and it isn't nice.

CAP has taken the camp dates, the camp lists, the location, everything physical that can be taken.

But they don't have Camp Starlight. They never will. That's the part they don't get. That's the reason they started cutting the heart out of camp forcing Camp Starlight to cut ties with them.

Camp Starlight isn't the donations in the shed or the folders of forms. Camp Starlight isn't a shiny way to attract donors so that money can then be funneled to other projects it was not intended for. Camp Starlight is not a way for a bully who has lost sight of what it means to work for a non-profit to further his or her career.

Camp Starlight is busloads of kids arriving at camp with smiles bigger than their camp duffels. Camp Starlight is singing in the dining hall and getting your bunk counselor to skip around the room. Camp Starlight is a week where the whole world disappears.

Camp Starlight is the people who got together fifteen years ago and said, "Let's do something amazing" and did. It's my sister training and supporting a team of volunteers as well as caring for the mental health of the campers. It's the counselors, like Greta who can make any kid smile and Ebony who is always happy to play one more game of kickball.

At Camp Starlight, you can send people Stargrams, notes that you put it in the "mailbox" and will be delivered to the addressee during meals. Two days before camp was over, I received a Stargram that said, "Will you do a dance with me in the talent show?"

I've been invited to speak at Georgetown. I've been honored with a literary award. I've been quoted in The New York Times. But nothing made me feel the way that note did. Never before have I felt more honored or needed or loved or, I don't know what. I just know that I still cry when I see that tattered, purple piece of paper.

And I still get teary-eyed when I flash back to the last night of camp when we each cast our Fire Wishes, our hopes and dreams for the coming year which we note on scraps of paper and toss in the fire. I wished for health and happiness for my campers and fellow counselors and I wished for the long life of Camp Starlight. The real Camp Starlight. Our Camp Starlight.

I did dance in the camp's talent show, "A Night of 1000 Stars," with that little girl and I don't know which one of us enjoyed it more. I do know that thinking about it makes me feel extra sad that CAP decided to play dirty. But I also know that I am thrilled that Camp Starlight won't suffer for it.

The only real change is that Camp Starlight will be in a different location this year. But it couldn't matter any less. Camp could be in an empty lot and the kids (and the counselors) would be just as happy. Because CAP missed the point. I am Camp Starlight. We are Camp Starlight. We are a family, a community, a world unto ourselves and we are all bound to one another with the one thing that neither CAP nor anyone else can ever take away: magic.

For more information about Camp Starlight, visit