A Football Dream Transformed

Football has always been a love of mine. Since before I could walk I was mesmerized by the game. As a young child I dreamed about being an NFL player as I would play pickup games with friends and family. At the age of 12 my dream went out the window when I was diagnosed with Friedreich's Ataxia (FA), a rare neuromuscular disease. The disease is progressive, so not only did I lose my ability to walk over time, I also began to have trouble with my speech and other fine motor skill functions.

For the majority of my pre-adolescent childhood I was able to do most of the things that all other kids could do. I had no reason to believe that my world would fall apart. I played soccer, used the playground, ran with my friends playing "tag" and "duck, duck, goose" like everyone else. As I got older I became clumsier and slower. My mom continued to search for answers as to what was going on with me despite my pediatrician's thought that it was just a phase. Finally, my mom and I were able to convince him that I needed to see a neurologist. It took five minutes for the neurologist to give me the horrible news. It took a long time for me to adjust to the diagnosis and what would become my new reality.

After I graduated from Port Byron High School, I attended Cayuga Community College. I worked hard and achieved my associate's degree but I didn't stop there. I very badly wanted to attend a four-year school, but I knew living on campus would be a struggle. As a result, I applied and was accepted to SUNY Oswego under a psychology program, but after a year of classes I knew that it wasn't for me. I transferred to Empire State College and earned my bachelor's degree in sports studies, which includes journalism and coaching. It took me six years to accomplish this, but I persevered and finished my degree.

Stephen coaching his football team

With a degree under my belt, the next step was finding something to do with my time, whether it was volunteering or finding a job. My first step was creating a Facebook page called Sports By Stephen with the hopes of getting discovered by a magazine or newspaper so I could become a published journalist. It took about six months, but I was contacted by Sports Life Magazine. For the past three years I have been writing sports articles for them in addition to maintaining my sports blog. While I'm good at writing, my real calling is football.

At age 24 I joined the coaching staff at my alma mater in Port Byron, New York. I love helping the kids learn and feel good about themselves. Being a football coach is so rewarding because you can see the progression of the skills that the players are developing and the excitement that they have when they hit the field.

Stephen coaching young football players

I love coaching so much that three years ago I joined the Auburn Commanders' semi-pro coaching staff and last year I joined the Auburn Pride semi-pro football coaching staff as an assistant coach. Although I have some limitations due to my illness, I have learned to minimize the impacts that they have on me. I use a headset microphone to amplify my voice so the players can hear me, a track chair at practice so I can get around the field easier, and, with the help of one of my mentors, my regular manual wheelchair at the football games so the track chair doesn't tear the fields up. These tools help me to be the best coach I can be. Sometimes even if you have obstacles in your way there are things that can help facilitate a way around them.

When I was 16, I started to use a wheelchair because my walking had deteriorated. I was introduced to Monroe Wheelchair Company and have been working with them ever since.

Stephen using his track chair

My track chair has been a great addition to my life. It not only allows me to get around at practice, but it allows me to get out in the woods. Aside from football, hunting is another passion of mine. I can go into the woods even if there's snow or mud. It can cross small branches and piles of debris and get into my handmade deer stand.

One more important part of my life includes my dog Dez. She is a pit bull mix and she is like my daughter. Most people are afraid of her when they first meet her because she is very protective of me. However, once you get to know her, and she knows you, she is the biggest sweetheart ever. Dez knows me and how I'm feeling. She is my alarm if I can't reach something or if I drop my phone she will bark until someone comes to help. She is a good watchdog, too.

The biggest challenge I face aside from my daily struggles with FA is remembering that I still have the ability to do things on my own or with minimal assistance even when they are more difficult to complete than I like to admit now. I have met others with Friedreich's Ataxia and know that I am still very lucky to be in the shape that I am in and have my health holding strong.

I am 29 years old now and so much has changes since I was first diagnosed, and even in the 10 years since I graduated high school. I have been blessed throughout my life to have an amazing support system in place that includes my family and friends. My friends are the most amazing group of people anyone could ask for, and they have always made it a point to include me even outside of school. We still get together from time to time as our adult schedules allow. Although I have a lot of challenges that I endure on a daily basis, I still feel very lucky to have the life that I have.

When I'm not coaching football, I keep busy playing adaptive sled hockey with the CNY Flyers through Move Along Inc. I also attend the gym or work out at home at least three times a week. By using an armbike I can work on cardio on my own at home. Physical therapy is an important part of my life so that I can learn how to maintain my mobility as safely as possible as my abilities change. I am fortunate to have a team of great doctors to help me stay in good health and combat struggles as they arise.

My dream of being an NFL player died when I was diagnosed with Friedreich's Ataxia, but I have a new dream. My new dream is to become an NFL coach. I am working hard in my current endeavors and feel that I am that much closer to where I want to be. No chair will ever keep me from getting to where I want to go. I will show people that even though you have a disability, you can accomplish whatever you want. All you have to do is dream.

About the Author

Stephen Siracusa

Stephen, football and sports lover, resides in Port Byron, New York. He spends a lot of his free time with friends, working out at the gym, and playing with his dog, Dez. He enjoys being enthusiastic and encouraging others to live life freely. You can often find Stephen hunting and fishing in his track chair, playing sled hockey with the Move Along Inc. Flyers, shopping, and coaching. Anytime you see Stephen he is always laughing with a smile on his face.

Most of the stories here on Live Quickie were submitted by readers. Do you have a story to tell? We'd love to hear it. Submit your story here.

Date: 10/9/2018 12:00:00 AM

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