Person Centered Spotlight: Meet Stephen

Growing up, Stephen Siracusa was your typical, active child: running around on the playground with friends, playing soccer, and dreaming of being in the NFL someday.

As Stephen grew older he became clumsier and slower. While doctors said it was just a phase, Stephen and his mother searched for answers.

At the age of 12, Stephen was diagnosed with Friedreich ataxia (FA), a rare genetic disease that causes nervous system damage and movement problems that worsen over time.

Care Coordinator Ciara and Stephen pose smiling.

Ciara (left), Stephen’s Care Coordinator, and Stephen (right). (Photo from Ciara Tallman)

“It took five minutes for the neurologist to give me the horrible news,” says Stephen. “It took a long time for me to adjust to the diagnosis and what would become my new reality.”

Over time, Stephen began to lose his ability to walk as well has speech and other fine motor functions. Most would be discouraged by a diagnosis like Stephen’s, but he’s never let it stop him.

Ciara Tallman, Stephen’s Care Coordinator, has witnessed Stephen’s hunger for success and commitment to not letting anything get in his way first-hand.

“I learn from Stephen that it’s only a bad day, not a bad life. Keep moving forward because the only person in your way is you,” says Ciara. “No matter who you are and what disability you have, or don’t have, you never know what can happen.”

Ciara says that if Stephen wants something he does it, and there’s nothing that will get in his way.

CNY Sled Hockey team on the ice talking in a circle with their coach.

Stephen plays on the CNY Flyers, an adaptive sled hockey team. (Photo from Stephen Siracusa)

After graduating from Port Byron High School Stephen received his associate degree from Cayuga Community College. After that, he received a bachelor’s degree in sports studies from Empire State College.

Though he uses a wheelchair and can’t play traditional sports on his own two legs anymore, Stephen’s determination to be involved with athletics continues. He took his sports studies degree, combined it with his love for sports and made a career for himself.

Stephen poses smiling on the football field.

Stephen began coaching football for his alma mater, Port Byron high school, at a modified level, and eventually moved on to J.V. and Varsity. (Photo from Stephen Siracusa)

He started a Facebook page, Sports by Stephen, as a blog where he posts game write ups, highlights and more.

Stephen also plays hockey for the CNY Flyers, adaptive sled hockey team through Move Along Inc.

His proudest accomplishment, however, has been getting the opportunity to coach football for his alma mater, Port Byron High School, and a semi-professional team, the Auburn Pride.

“I started coaching football at a modified level and worked my way up to J.V. and Varsity,” says Stephen. “Now I’m coaching semi-pro.”

Stephen’s next goal is to earn a paid coaching position.

“I hope to one day work with the Dallas Cowboys,” Stephen says.

Stephen has achieved much success in his life, but his journey hasn’t always been easy.

“My transition into the wheel chair was a big challenge for me,” Stephen says. “But I overcame this with all of my friends and family supporting me.”

Stephen poses smiling in wheelchair on the football field next to an Auburn Pride football player.

Stephen also coaches semi-professional football for the Auburn Pride. (Photo from Stephen Siracusa)

Ciara has also been a support for Stephen, and while she says he is very independent and rarely needs her help, she is always checking in and lending a helping hand when he needs it.

“Whenever I need [Ciara] I ask her and she does it. She is always working hard to get what I need done in a timely manner,” Stephen says.

Stephen’s positive attitude and determination has helped him reach his goals, and he wants others to remember that they too can achieve their dreams.

“Keep going and never give up. Always do your best,” Stephen says. “There are always people out there who will support you, your goals and dreams.”