Lauren's Story - The Life I almost Didn’t Have
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Every day, I give special thanks for the life I almost didn’t have. And, I give thanks to Starlight for helping me find my way out of the darkness into the light.
I can’t tell you how wonderful it is to be writing this, to be able to tell you my story from the other side after coming through it all.
There was a time when I wasn’t sure I’d ever get out of my bed.
When I was 13 years old I got very sick with a rare disease that affected my nervous system. It took many painstaking months before the doctors were able to diagnose me, and even then, no one could give me a prognosis or predict if I would live much longer. During that year, most of which I spent in the hospital, I slowly became paralyzed until I was able to move only my right hand. Severely allergic to light, I spent the next several years in darkness.
For six years, I couldn’t feed myself, I couldn’t put on clothes, I couldn’t leave my dark room. What I was most sad about was not being able to see my friends and be a regular kid. I was never able to attend high school and my days of playing sports and living a healthy, active lifestyle became a distant memory. Worst of all, I watched my parents and my sister suffer every day with the fear and worry of what was going to happen to me.
I was confined to my hospital bed when I was first introduced to Starbright World, an online community for seriously ill teens. Starbright World, or “SBW” as us kids affectionately called it, had chat rooms, games, and access to information about different diseases and illnesses.
But the best part was that it opened up a whole world of friends. In the darkness, with only one hand on the computer, I was able to communicate with others who understood what it was like to be sick. I talked to kids about what was going on in my life and about the kinds of things they were suffering from. Soon, though, it wasn’t just about our illnesses. We talked about our hobbies, favorite movies, music and our hopes and dreams for the future. I developed amazing friendships and felt like I belonged to this elite club made up of the bravest people I knew.
The more time I spent logged into Starbright World the more I began to understand just how much Starlight Children’s Foundation did for thousands of special kids and their families.
Later on, something amazing happened – Starlight offered me a job. They asked me to be a chat host, which meant monitoring the chat rooms and mentoring other kids on Starbright World! Now, not only was I talking to all my friends online, but I was getting paid for it, too!
Working for Starlight allowed me to support other kids in similar situations, and gave me a sense of pride, dignity and most of all, normality. My healthy friends had started working and without Starlight I would have missed out on the excitement of being a teenager working my first real job. That’s what Starlight did for me: They gave me back my adolescence. They allowed me to have the same experiences as healthy teens and, because of them, I never felt like I was missing out or being left behind.
When I was 19 years old my health slowly but surely began to improve. I was able to regain a little movement in my limbs, tolerate some light and use a wheelchair to get around. Even as my schedule got busier and I spent more time at physical therapy, I would still sign onto Starbright World every day. That was where my best friends were – friends I will know for the rest of my life.
There were times when being in bed and in the darkness took its toll on my spirit, but no matter the challenges, no matter the heartache or frustration, Starbright World was always a light that shone through the pain and made its way to me. We had our own prom on Starbright World, we had our own stories, we made our own community. Starbright World was an escape from the confines of that dark room to a place with life, laughter and friendships. It was the one place where everyone understood me and welcomed me for who I was, not for what disease I had. There, I was simply Lauren.
Starlight helped me when I couldn’t help myself. Now that I can, I want to spread the word about this amazing organization and the work that they do.
I know that sometimes it’s hard to visualize where your hard earned dollars go when you donate to a charity. But, in thinking about Starlight, think of me. Think of these other children who may still be in their own dark rooms or hospital beds and give generously to continue the vital work of this amazing organization. Only you make it possible for Starlight to shine the light that brings us all out of the darkness.
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Where is she now?
Lauren is now a happy 24 year old who recently moved to Los Angeles from Kansas City to pursue her dream of writing. In 2005, through Starlight, she was introduced to Steven Spielberg who promised her an internship on one of his films as soon as she was healthy and mobile. Almost as soon as Lauren regained mobility she moved to Los Angeles and began working with Steven on Indiana Jones and the Kingdom of the Crystal Skull.
Today, Lauren is working on a documentary, Don’t Pet Me, I’m Working about service animals (animals specifically trained to help people who have disabilities). She is the proud owner of a beautiful St. Bernard service dog and expects the film to be ready for release in early December 2009.
She is still a dedicated chat-host for Starbright World and keeps in close contact with many the friends she made online. In fact, she credits a close circle of Starbright World friends who all decided to move to Los Angeles at the same time for her own decision to relocate.
While she is blessed with a wonderful family and circle of friends, Starlight is proud to call her our friend and a cherished member of our extended family.