Brighter Than the Stars

This is the story of a man whose disabilities have made him a better person – and the world a better place. This is the story of Marty.

Until Marty Sheedy was born on September 15, 1986, his parents had no idea that anything was going to be wrong with their new child. When he was born, Marty was quickly rushed to another hospital, where he remained for the first six months of his life, while his parents were informed that their son wasn’t likely to live more than two years. If he did live longer, the doctors predicted, he would have no quality of life. All the doctors in the Detroit area said there was nothing they could do to help, and considered amputating his legs.

And then, he went to a hospital in Chicago, where he was finally diagnosed with Arthrogryposis Multiplex Congenita (AMC) and Prune Belly Syndrome (PBS). He had surgery to straighten his feet, and he now wears braces to help keep him stable. Tummy Tuck surgery was also done to correct the lack of muscles in his stomach due to the PBS. Because of his arthrogryposis, he has scoliosis, and several years ago, he had a metal rod put in. In addition, Sheedy’s hips are dislocated, making it extremely difficult for him to walk normally.

When Marty was three years old, he developed the “scissor gait” – walking with his feet crossed. When his doctors saw that, they encouraged him to continue walking that way, saying that he would have much more mobility if he could get around that way.

There are many aspects of Marty’s life that make him feel lucky to be where he is in life. For one thing, he says that the fact that he’s been walking around for 29 years with only one kidney is unusual for people who suffer from PBS.

He also considers himself lucky because he had a great childhood, surrounded by family and friends who loved him and accepted him for who he was.

Marty was mainstreamed at an early age and was able to graduate school like everyone else. Throughout his years in school, he was never treated badly or made fun of for his differences. In fact, when he was in the seventh grade, Sheedy was the first student with disabilities to run for vice-president – and he lost by only 7 votes!

One thing that helped him tremendously on the social scene was the way he was upfront about his condition.

“If I were looking at myself through someone else’s eyes,” explains Marty, “I would wonder what I was seeing.” Because he’s so forthcoming, however, others are able to look beyond it and just treat him as the amazing human being he is.

Today, Marty lives almost entirely independently. He drives a hand-control car and moved out of his parents’ home ten years ago. Although he does need help putting on his shoes, lifting things and putting his walker in his car, he’s not afraid to ask for help.

“It’s the people around me who make me who I am,” Marty acknowledges.

Thanks to all the support he’s received throughout his life, Sheedy always wanted to be able to give back, and that’s why he started the Project Scissor Gait Foundation.

The mission of the Scissor Gait Foundation is to support people with AMC or PBS by providing them with scholarships, specialized medical equipment and funds for hotel rooms during medical conferences. But mostly, the foundation aims to provide hope.

When newborns and children are diagnosed with PBS or AMC, they often have to spend several long months in the hospital. Project Scissor Gait lets their families know they’re not alone by sending out care packages with coloring books, toiletries, a $100 gift card and a blanket made with love by another AMC mom.

Marty cherishes every day of his life, just as it is. In his words, “I live a life full of experiences – I wouldn’t change it for the world! I’m really lucky to have both conditions and still be as mobile as I am.” Marty feels that he was given just enough of the symptoms of PBS and AMC to understand and help others with these diseases.

Marty travels often and gives inspirational speeches to large audiences. At the end of his presentations, he ends with this powerful quote that pretty much sums up Marty’s entire life:

“We all have a light inside of us that can shine brighter than the stars. Find that light within you and shine it upon the world. We make a living by what we get, but we make a life by what we give.”

 

To learn more about Marty Sheedy and Project Scissor Gait Foundation, visit his website or check him out on Facebook and YouTube.