“I decided to fight back”

By Russell Caratenuto, FSH Society Ambassador

As a child I never second-guessed my ability to stick out my shoulder blades and make what my friends would call “wings”.

This difference never stopped me from being the most athletic child I could possibly be. Up until puberty, I was among the fastest, strongest, and most physically gifted in my age group. I excelled at football and was a strong kid. I was able to manage the endless running in soccer, football, and basketball.

As I started to mature into a young man, I slowly watched myself lose all of this ability. My shoulder blades went from something that I could voluntarily stick out, to something that would stick out on their own. I was unable to lift my arms up for extended periods of time and watched in confusion as my athleticism and physique declined. Something was seriously wrong.

After countless tests, evaluations, and physical exams, it was determined that I had FSH Muscular Dystrophy. I was heartbroken as I was told that I could no longer play the only sport that I had left, volleyball.

I decided to fight back.

I spoke to my high school volleyball coach and explained my situation. I was determined to work harder than everyone else just for an opportunity to play again. Two years later and after countless hours in the gym, I earned a varsity letter and became a conference champion.

I have dedicated a large part of my life to making a difference. This past year, I planned and organized a fundraiser at my high school with the volleyball team and the FSH society. I am ecstatic to continue working hard for awareness and to raise money for FSHD.