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Sun Valley Community School, Idaho

My whole life, my parents and I joked about how short I was. We would say things like, “It must be the Peruvian in you,” since Peruvians are not the tallest. I always wondered why I was so much shorter than my classmates, but being Peruvian was the only answer that I was given, so I thought nothing of it. When I turned eight, my family pediatrician said that she wanted to get to the bottom of why I was so short. She referred to us to possibly the greatest doctor ever, Dr. Flynn. Before I could see Dr. Flynn I had to get my blood drawn.

I was not very excited about this, but I had to deal with it. I wanted to go to school, not the doctor, but there I was in a chair with the tightest rubber band ever around my arm, waiting to get my blood drawn. The situation didn’t get any better because the rookie nurse taking my blood was as nervous as I was. She had to stick the needle in my arm like five times until her supervisor stepped in and found the vein right away. I screamed and cried the whole time, and I didn’t even get a sticker at the end of it.

I was so relieved that I wouldn’t have to do that again for a long time, but then, after school that day, my mom told me that I had to get my blood drawn again because they didn’t get enough. I was so mad, but again I had to just roll with it. The second nurse was much better, but I still screamed and cried. After that day I decided that I was going to become antivax and I was never going to get another shot ever again. That dream was very short lived because only six months later, Dr. Flynn looked at me and said, “You have Mosaic Turner Syndrome.”

When I heard the word “syndrome,” I thought I was going to die. Dr. Flynn explained that Mosaic Turner Syndrome is not anything fatal, it just means there is a deformity in your second X chromosome that can make you short. I was glad I wasn’t about to die, but then he told me that I would have to take growth hormone in the form of an injection every day until I’m 15. At that moment I wondered if you could politely decline having Mosaic Turner Syndrome. I quickly learned you can’t, and that again I couldn’t do anything to help myself.

When I went back to school the next day, I didn’t want to tell anybody because I didn’t want them to feel sorry for me. I didn’t want them to think of me or look at me as The Girl with Mosaic Turner Syndrome. I had so many questions with so few answers. I didn’t know anyone with Turner Syndrome, so I had no one to talk to. When it came time for me to use my shots for the first time, I was really nervous, so my dad gave me my shot for the first couple months until I had to go on a school trip

At the point, I’d told my class I had Mosaic Turner Syndrome, and some of them wanted to see me give myself my shots, but I hadn’t actually given myself a shot. But my dad wasn’t there, so I just had to go for it, which I did. It was a huge relief. I finally felt like Mosaic Turner Syndrome wasn’t something holding me back, but something that made me stronger. I faced two of my biggest fears: Turner Syndrome, and more importantly, shots!

© Emma. All rights reserved. If you are interested in quoting this story, contact the national team and we can put you in touch with the author’s teacher.


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