When I was about nine or 10 years old, I started to get really tired and began to gain weight. After a few months, my mom and I flew to Chicago to meet with doctors (we had been living in Mexico at the time) and I was diagnosed with my first illness, Hashimoto’s thryroiditis, an autoimmune disease that was causing my cells to attack my body.
Again, I was only nine or 10 at the time, so the news didn’t strike me as being too big of a deal. My mom and I terribly missed my two brothers and dad – “the boys” - back in Mexico, but other than that, I was fine with having to take one pill every day for the rest of my life.
Then, in 2007, our whole lives changed completely.
My immune system began attacking my gallbladder, so on my 14th birthday I had it removed. During my surgery, doctors performed a biopsy of my liver and it landed me a second diagnosis - Autoimmune Hepatitis, and at stage 2 failure (there are four stages altogether).
Suddenly, my hospital stays began to last weeks at a time. My mom always stayed by my side, and although my brothers and dad had moved back home, I didn’t get to see anyone. It was horrible. My brothers missed having my mom and me around and my dad was always busy with work. We moved in with my grandparents because money was tight and they helped getting my brothers to school and getting my mom to and from the hospital when needed.
Over the next few years, my immune system continued to attack my body. My stomach is shut down, so I am now completely fed through a j-tube in my small intestine. I have interstitial lung disease, so I’m also on oxygen 24/7. My liver continues to get worse and is now at stage 3 ½ failure.
I can’t risk getting sick, so I'm unable to go to school or leave my house much when I am home. For the last two and half years, I’ve spent at least two weeks of every month in the hospital. Sometimes, I’ve been admitted to the hospital for months at time.
Socially, my diagnoses have turned my whole life kinda upside down. Classmates didn’t understand my inability to just “get better.” I quickly lost friends and wasn’t able to stay in school because I had way too many sick days. When I would visit, everyone treated me differently. People were afraid to hug me and tried to talk about anything BUT the reality of my illness even though they saw the effects of my meds and the bruises I had received from IV’s and other tests.
I went from being a very active member in my church youth group to hardly being able to spend an hour with friends because it just wore me out. I missed my life, my friends and school. I missed having energy and not feeling well. No one understood me. No one understood what I was going through. To be honest - I was scared.
Emotionally, my illness just affected everyone. How could it not? My brothers detested the pity they were shown by everyone and hated the title they were given - “the sick kid’s brothers.” My dad started working more and more, trying get away from reality. Even my mom had to stop working because she was spending so much time with me at the hospital. Over the years, we have all learned how to manage getting through each hospital stay and standing together to fight this out.
A child life specialist first introduced me to Starlight and its online social network Starbright World in early 2008, a few months after my second diagnosis. I was nervous about entering the site’s chat room, so I simply created a MyLife profile page and followed the stories of other members. Soon, I grew comfortable enough to finally enter the chat room – however, I would never take part. I’d just sit there and read everyone’s conversations. People in the chat room would try to talk to me and I would ignore them in those early days, yet everyone made me feel so welcome and part of the family.
In time, Starbright World became my most visited website. I was spending most of my time in the chat room getting to know hosts and other members – and I LOVED it. Over the years, Starbright World has helped me through everything – surgeries, treatments, horrible diagnoses and scary times. My friends there have changed my life. Starbright World is a place where I can be normal and not stick out because of my illness. It’s where young people like me can relate to one another and where I can find people who’ve gone through the same procedures as me or who can answer questions I have about procedures I’ll be receiving for the first time.
My friends on Starbright World don’t care if I have chubby steroid cheeks or I if I’m stick thin from treatments. They don’t care if I’m covered in bruises or if my stomach is covered in scars from surgeries. The see me as a person and care about me.
Starbright World is like a second family comprised of people I love and learn from every day, and it allows me to be there for others in the same way they’ve been there for me. When I’m in the hospital, I love talking about Starbright World with new teens who have just been given a diagnosis. I love being able to share this life source with families/teens who are scared and new to the world of serious illness. It’s such an honor.
Because of Starbright World, I feel my journey with a terminal diagnosis has been transformed into one full life.
I want to say thank you to everyone who supports Starlight because you have given me a chance to feel normal even in a hospital-filled world. I never would have thought that meeting a bunch of sick teens would turn something horrible into something incredible. Thank you for donating. Thank you for supporting. Thank you for sharing. You are truly bringing life to a lot of people.
Starlight Teen Kelsey
A special note from Kelsey's mom, Lesley:
I mostly just want to add on a special thank you to everyone who donates to Starlight. I could see the change in Kelsey as she got more comfortable and got to know people on Starbright World who understood what she was walking through. :)