“Starlight is so much more than just toys and games,” says Tanya Ybarra, M.S., C.C.L.S., a child life specialist at California Hospital Medical Center in Los Angeles. “Where you see a can of Play-Doh, I see a tool to help my pediatric patients understand how cancer cells form a tumor, and how we treat it to help them get better.”
“Advocate Children’s Hospital is thankful for this generous donation from Astellas USA Foundation and Starlight Children’s Foundation. On behalf of the teens and children we care for throughout the Chicagoland area, we want to thank you,” said Mike Farrell, President, Advocate Children’s Hospital. “At Advocate Children’s Hospital, we focus on making our care environments safe, sustainable and engaging. This generous gift allows us to enhance our teen lounge and provide technology and design elements important to teens and their families.”
“At The Children’s Hospital at OU Medical Center, our priority is our patients and providing them the highest quality care,” said Jon Hayes, CEO of The Children’s Hospital. “This means focusing on the healing of the whole child, and we’re grateful to Astellas USA Foundation and Starlight Children’s Foundation for embracing this goal with us by helping enhance and beautify the dialysis unit.”
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.
While Starlight Children's Foundation has a good overall message they do not have the best interest for the teenagers involved in their social media website "Starbright World." Starbright World is a Facebook-like website for teenagers with chronic illnesses and the administration decided to shut down the website without warning to its members. Members had to put together other means of contact within three days before the site was to shutdown. It was a sudden notice that many were take aback by. Several members didn't even know the website was shutdown until after it was already done. Teenagers with chronic illnesses need the support of others to understand they are not alone and find a safe place to confide in others with their feelings. Instead of giving us support they destroyed the community we once had. Starlight Children's Foundation chose not to support those most vulnerable who needed them the most.
Starlight Global advertise an incredible mission to 'empower donors and strengthen communities by supporting the physical and emotional health of children and their families where they live, work and play'. If only they stuck by this.
Over the years, Starlight has had an incredible and positive impact in my life. I live in Australia, so I first came involved with Starlight through Starlight Australia, (which I will note is separate to Starlight Global), through the incredible Starlight Express Room at my paediatric hospital. Going to the Starlight Express Room was an incredible escape from my reality of what seemed like endless admissions, treatments and procedures and therapies. For a moment I could just forget about my reality, I could just go and joke around with the Starlight captains, chat about the things people my age usually would, play some games, do some art and just enjoy myself. It was incredible!
It was here I was introduced to Livewire Online, which is Starlight Australia's great online social network for kids and young adults living a chronic or serious illness or disability, supporting them both in hospital and at home. At the time, this program was joined in a chat room with Starlight Global's similar program, Starbright World.
I loved Starbright World right from day one. It was incredible. The impact it had on my life was even more incredible. When I joined Starbright World, I was not in a great place. Stuck in a hospital, far from home, after having had my life as I had known it, turned upside down and torn apart, I was incredibly withdrawn and isolated and felt misunderstood by those around me and felt I had little purpose in life.
Starbright World changed that. It was like a chosen family right from the first time I logged on. For the first time ever, I felt as though someone understood what I was going through. I realised I was not alone in the challenges I faced. I could log in at any time and chat to people who had faced similar challenges and experiences, people I could relate to and gain invaluable advice and support from. But it was so much more than that as well, it was not all about the medical challenges we were facing, it was just like we were actual friends, talking about everything else that was happening in people's lives. How school or sport or art classes were going, the latest and greatest TV show, movie or music, celebrity gossip and whatever else came to mind. We played games, we watched movies together, we did everything. The distance between us was irrelevant!
There was even more than this too though. During my years on Starbright World, I grew so much as an individual. Members and moderators shared their experiences of how they did not let their diagnoses and prognosis define what they achieved in life. It was the first time I realised, 'well, yes I have been told I will not be able to do much anymore, such as returning to education and sport, but why should that stop me at least trying?'. It made me realise that the world was still my oyster, anything was possible if I wanted it and put my mind to it. The support I received from everyone was incredible. They were there to help navigate and support me through the tough times, and celebrate with me during the great times. I was given incredible opportunities within the community, both in leadership and general skills that helped me gain and build on skills. I became a lot of confident and self motivated, and this helped build up my life outside of Starbright World too.
I can safely say, that there is absolutely no way I would be where I am in life today, achieving what I am, without Starbright World. Because of Starbright World, I am living my life to the fullest. I am at university, studying medical research, I am heavily involved within my community, mentoring youth with disabilities, running seminars, am part of a youth disability advisory and advocacy board, am president of Sailability, an organisation aimed at getting people of all abilities on the water sailing and so much more. Because of Starbright World, I know that my diagnoses or prognosis's do not have to and now will not ever define what I can not do.
Recently, Starlight Global made the incredibly sad decision to end this program, a program that was having an incredible impact of many people's lives. Now, I understand that there comes a time for all things to come to an end, and I also understand there sometimes comes a time when things are not longer viable, but Starlight Global tore this community apart in the worst possible way. They used foolish statistics, that showed how out of reach with the program they were, to notify the members of the community that there was no longer a need for the program and it would close in 72 hours. They had little care for this incredible community. They tore the communities home or landing place away from us without even notifying all of the members, some of whom had been members for years on end. To this day, they have still failed to notify all of the members. They just removed the site and all proof of its existence, which as a member of the site for years, find truly disappointing.
Once again, Starlight Global claims to strengthen communities by supporting the physical and emotional health of children and their families where they live, work and play. They did everything but this.
Very disappointed with Starlight Global, and I definitely think people should think twice about supporting this foundation in the future.
Although the names may be misleading, Starlight Australia, and other Starlight counterparts, who are not part of the running of Starlight Global, around the world continue to have incredible impact on the lives of those living with chronic and serious illnesses and disabilities, through their amazing programs. Support should definitely continue of these organisations.
A great organization however I believe they care to much about statistics. I was apart of a website the organization hosted called starbright world. This was a very useful website that I loved and would be on whenever I had spare time. But then when I logged on one time I saw they were closing the website down. They took everything I loved away in just three days. They did this because they said the need wasn't being fulfilled anymore. but they were wrong the need was definitely there I am sure lots of people would agree. we became a family. we needed each other to help cope with everything that was going on in our lives and a lot of us went through a lot and the people in charge of starbright just stopped it dead in its tracks fortunately we were able to stay connected through other means of social media but it just isn't the same. I wish we still had that outlet to just talk with other people that understood what we were going through...
My name is Alisha and I found Starbright world when I was 13. I was already battling one illness, and undiagnosed with others. During my time here I've been diagnosed with 2 other illnesses. These diagnosis processes were long and exhausting, and there were many days spent in doctor's offices and many nights spent in the hospital, and there were many many tests. Starlight has meant so much to me, back when I was very ill and fighting for my life, and now as I am fighting towards remission. The people I've met on Starbright world, hosts, volunteers and others with illnesses like mine, have been so supportive and encouraging, and I don't know how I would have gotten through this without them. The fun bags starlight provided when I was in the hospital was a source of fun and a way to ease my mind as I faced upcoming tests, and the super cool teen room and the people was a way to let me just be a kid, even when I felt like I'd had to grow up too fast. I guess I'm trying to say that Starlight has meant the world to me. It's given me the courage to dream, it gave me the courage to fight for my life and now it continues to give me the courage to walk every day in remission, and to adjust to this new way of life.
My name is Bri! I have been a member of Starlight and Starbright World for 2 years now. Starlight has helped me in so many different ways! Their online social network Starbright World for teens with illnesses has helped me make so many close friends who also have illnesses! I would recommend Starlight and Starbright World to any teen who has an illness so they can get support from so many awesome people!
I have lived with Juvenile Rheumatoid Arthritis for nearly my entire life. The complications from this disease and the medications that I take for it are many and painful. I also live with asthma and other conditions. Early last year I was sitting at home unable to do much of anything because I was so sick. It occurred to me to wonder if there was any way for me to connect with peers who also were sick. I was lonely, sad, and had no way to discuss my pain with anyone. After a simple Google search Starbright World came up at the top of the list. I couldn't believe that I hadn't heard of SBW before. I applied to join that day.
SBW has been an amazing influence in my life. Ever since joining I have felt so much less isolated. When I'm too sick to leave the house I still have someone that I can talk to. The people on SBW are friendly and welcoming. It's hard to be sick, but with SBW it gets a little bit easier. You can talk freely about your illness without fear of being judged. People can share their experiences with different procedures and medications and help others through their journey.