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CFF Scholarship Winner Essay 2017

Congratulations to Carly Verbeke on winning our Naag Tag Cystic Fibrosis Awareness Scholarship for 2017!


Carly is a sophomore at Arizona State University and is studying English with a focus on Linguistics. She'll be attending ASU until the summer of 2019.


Each year Naag Tag awards $1500 in scholarship money to a deserving student in return for their submission of an essay describing one of the following:

• How we can help people with Cystic Fibrosis

• How Cystic Fibrosis has affected you

• How can you raise awareness or revenue for research of the disease


 

Naag Tag’s scholarship team was touched by all the essays for this year's contest and thoroughly read every one of the essays that were submitted. It was very clear when reading the entries that CF has had a great impact on many people. Carly's essay showed how CF can impact more lives that just the one affected by Cystic Fibrosis and how there is always a deeper good among the bad.  We are pleased to share her essay with you now.


 

The Freak Next Door

Growing up, I was used to being “the girl in the wheelchair.” Although it didn’t bother me too much, it did hurt when the other kids my age treated me like I had the plague – staying as far away from me as possible because they were afraid that they were going to catch what I had. Needless to say, I didn’t have very many friends. That is, until “that weird girl” moved in down the road. I didn’t know anything about her, but my brothers talked about her like they had just seen a monster when they caught a glimpse of her going into the house one day. They talked in hushed voices, as if they were afraid she was going to hear them from three houses away and come murder them in the middle of the night. “Did you see how skinny and gross looking she is?” one of them said. “Yeah, I’m really glad Carly is just in a wheelchair instead of looking like that. I wonder what’s wrong with her,” said the other. My ears perked up at hearing my own name, so I spoke over both of them: “I wonder what’s wrong with you.” and then I asked my mom if I could go meet the new neighbors. She shot me a weird look, but then she gave me the go-ahead.

It took me a long time to convince Chelsea’s mom to let me meet her. She gave me an entire speech about how Chelsea was a lot weaker than a lot of kids, how she had a lot of difficulty doing things, and that she shouldn’t be exposed to germs (as long as the environment could be controlled that way.) It also took a lot for me not to laugh in her face, because if anyone could understand this girl’s restrictions, it was me. When I finally convinced Chelsea’s mom to let me meet her, I understood what my brothers had been talking about. Chelsea was really skinny, and I’ll admit that it did throw me off a little bit at first. I mean, I could see her cheek bones, and her eyes looked like they had fallen into the holes in her skull. I thought I had hidden it pretty well, but she could definitely sense my awkwardness because she said, “Hi! I’m Chelsea, but my family calls me ‘Chel’ or ‘Chelly’. I have Cystic Fibrosis, which basically means that my snot is a lot grosser than yours and gets stuck in my lungs and makes it hard to breathe. That’s why I have this mask, to help me get it out.” Then she looked me up and down and said, “What’s wrong with you?”

This time, I did laugh. I’d never heard anyone else be as blunt about their diagnosis as I was with mine. When I finally collected myself, I said: “Hi! I’m sorry your body doesn’t work right. Mine doesn’t either. My name is Carly. I have Cerebral Palsy, which pretty much just means that my legs don’t work. Can they fix yours?” – “No.” – “They can’t fix mine either.” and that’s pretty much the story of how I met my childhood best friend. There is nothing better than childhood innocence, let me tell you. Maybe it was because we were so used to the other kids our age being rude, or maybe it was because we figured we didn’t have anything to hide, but we were always incredibly blunt with each other about our diagnoses’, and I’d always end up at her house after a long day at school, where we’d spend hours ranting about how much Cerebral Palsy and Cystic Fibrosis sucked. Sometimes we’d even make it into a contest to see whose diagnosis sucked more.

Of course, Chel almost always won. Having mucus build up making it hard to breathe was worse than having legs that didn’t work. The rant sessions were my favorite part of the day, and I think they were hers, too, because living with any kind of life-altering diagnosis takes its toll on your mental health after a while and it was really nice to have someone who at least had an idea of what I was going through. Every rant session ended in a fit of giggles that made it hard for me to even breathe, and that wasn’t good for either of us, but it was well worth it. Eventually, we got so close with each other that I started going with Chelsea and her mom to her doctor’s appointments. It kept Chelsea in a lighter mood, which I think made it easier on her mom, and I got to learn more about medical stuff – which I have always been fascinated with.

Through her appointments, I learned that Chelsea’s CF was a lot more than “snot that was grosser than mine” like she had described when we were six. It was a progressive, genetic disease that caused her to have persistent lung infections and limited her ability to breathe over time. I learned that a defective gene is what causes a thick buildup of mucus in the lungs, pancreas, and other organs. In the lungs, the mucus clogs the airways and traps bacteria leading to infections, extensive lung damage, and eventually respiratory failure. In the pancreas, the mucus prevents the release of digestive enzymes that allow the body to break down food and absorb vital nutrients, which is why she was always so skinny. I also learned that Cystic Fibrosis is a disease that takes the good ones too soon. Chelsea Murray died when we were fourteen years old. The mucus in her lungs built up while she was sleeping, and it was too much for her to clear. As much as I’d like to believe it wasn’t painful, I don’t know if that’s true.

Chelsea was a bright soul, a truly happy girl who never let the Cystic Fibrosis slow her down. She was obsessed with everything that had anything to do with Harry Potter or penguins. Her laugh could turn anyone’s day around, and she always knew just what to say to make me feel better (even if it was a guilt trip to say, “Suck it up at least you can breathe.”) At six years old, this girl changed my life forever. Even though Cystic Fibrosis won her battle, I will never stop fighting her war. I plan to spread awareness of CF to everyone I possibly can, until I’m not here to spread it anymore (or until there’s a cure – whichever comes first.)

 

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Thank you Carly, for sharing your incredible story.

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