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Review for Starlight Children's Foundation, Culver City, CA, USA

Rating: 1 stars  

A little over a month ago, I would have given Starlight Children’s Foundation a 5-star review. Allow me to explain why this is no longer the case. For twenty years, Starlight had a program called Starbright World, which was a social networking site for sick kids. When I joined Starbright World earlier this year, I was very alone, having lost most of my friends due to my illness and disability. I couldn’t relate to any of my peers; I’d never even spoken to another person my age who used a wheelchair, much less someone who had my incredibly rare disease. I had no one to talk to about my intense and emotional experience with chronic illness. Everything changed when I joined Starbright World. I met wonderful, caring, supportive people who understood what I was going through and were happy to welcome me into their community. It was a place where I could share my experience, from devastating diagnoses to painful procedures to frustrating doctor’s appointments, without fear of judgment. It was the first time since I’d been sick that I didn’t feel alone. Whenever I needed support, I came onto the chat room, which was monitored by wonderful hosts and full of kids just like me. I made true friends, the likes of which I didn’t have in real life. Starbright World was the first place I would go whenever something wonderful or terrible happened. It was the only beautiful, innocent place I’d ever seen on the internet, and the only safe place I had in my life. I know I’m not the only one who felt this way. There were hundreds of kids like me who depended upon Starbright World for an outlet and a support system.

That was before this August, when Starlight announced that they would be shutting down Starbright World. They fired all of the incredible, giving, loving hosts without warning and gave us only three days notice before the site went dark. Sick, vulnerable, isolated kids, some of whom had been with Starbright World since the beginning, had their support system ripped away in less than a week. The effect was devastating. I was up until 4am three nights in a row, bawling my eyes out. One of my friends had a relapse of her illness from the stress. As kids with chronic illnesses, we already have enough stress and uncertainty in our lives! We weren’t even given an explanation; we were only told that there was no longer a need for Starbright World. We users banded together and desperately tried to save the site, proving that there was a need for Starbright World, but nobody listened. I sent emails and called Starlight Children’s Foundation, but I never got a response from either. They didn’t even send out emails to users, so those who didn’t log in during those three days didn’t find out until after the site was gone. We were completely abandoned and told that we should simply connect on Facebook. There are several reasons why this doesn’t work: 1) Facebook does not provide the anonymity and safety of a closed, monitored community, 2) many of the kids on Starbright World weren’t even allowed to make Facebook accounts, and 3) there is no chatroom where the kids can discuss about their experiences, and 4) it will not connect sick kids to each other in the future. The end of Starbright World was a travesty that hurt the very people it was designed to help. I am once again surrounded by people who don’t understand and can’t relate to me, and I feel more alone than ever. I can’t help but feel that Starlight Children’s Foundation doesn’t really care about sick children at all.

If I had to make changes to this organization, I would...

bring Starbright World back, or at the very least, give the users more notice before getting rid of the program.

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Role:  Client Served