Little Miracles Started to Happen - by Aly Elkin
Tuner syndrome (TS) affects us all in different ways, but here is my story. I was always behind on growth and weight charts, but nobody really thought anything of it. I had the nickname of “peanut” because I was so much smaller than other children my age. When I was 3 years old, my brother was born with a rare metabolic disease and my parents decided to get genetic testing done for me to ensure that my growth problem was just me being a “peanut” and not something more.
As it turned out, I had mosaic Turner syndrome, and I wasn’t just naturally small like everyone thought. After my brother received his diagnosis, doctors tried to frame my diagnosis as a good thing to my parents. “The good news is, she is not in any danger”, they told my parents. “She will be normal except for a few minor things”. The doctors then went on to tell my parents that I wouldn’t ever naturally go through puberty and I’d have to take growth hormone injections, I’d never have my own biological children, and that I would have to get my heart and kidneys checked for the rest of my life, but I would still be “normal”.
What is “normal” exactly? As I grew up and started to understand my diagnosis more, it sure didn’t feel like I was “normal”. I had constant doctor appointments, had to take growth hormone injections, struggled a lot in school, and was painfully aware of my future infertility. I was beginning to think I would never get into college, and that I was not going anywhere in life. But then, one by one, little miracles started to happen. When I was 12 years old, my body started to develop on its own, and growth hormone allowed me to reach my final height of 5’0. I always joke that I worked hard to get to 5 feet, and I for sure did.
I had already done 2 things that my doctors said I would never do: go through puberty without any intervention and reach 5 feet (with the help of growth hormone shots). We had even been planning to start estrogen patches when I got a bit older, but there was no need. To my own disbelief, I made it through high school and shockingly enough, got into college. In high school, I just barely got by.
In college, I flourished. I even decided to do it all over again and get my Master of Science in clinical rehabilitation counseling, and I graduate in May 2023 with a 3.9 GPA. One day, I may even go back and become Doctor Aly Elkin, who knows! I defied everyone’s expectations, including my own, and Turner syndrome is just a part of me.
While the future of my fertility, heart, and kidneys is still unknown, I have comfort in the fact that I have continued to defy all the odds and expectations. Every fetus with TS has a 98% chance of ending in a miscarriage, so the fact that we were born with only a 2% chance is proof enough that girls with TS are warriors who defy all of the odds. Every individual story is unique, but we all have this in common: we defy the odds and expectations set for us, and that includes our own. Turner syndrome is a part of me, but it will never define me.