By Danny Baggott @dan_baggie
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Videographer / director: Istvan Lettang
Producer: Danny Baggott, Kate Moore, Ruby Coote
Editor: Florence Kennard
33-year-old, Marty Sheedy, lives with Arthrogryposis – the joint contracture in two or more areas of the body – and Prune Belly Syndrome – the lack of abdominal muscles.
Marty weighs only 60lbs and stands at 4ft 10”, but his lack of weight and height are not the strangest symptoms of his condition.
In order to be able to move around, Marty has to use his legs in a scissor-like fashion – something most people have never seen before.
Doctors gave Marty just two years to live, but he has since defied all the odds and now loves people referring to him as ‘the scissor man’ and ‘scissor legs’.
Marty, who resides in Michigan, told Truly: “People call me ‘the scissor man’ and ‘scissor legs’ – and I love it!
“In addition to my two conditions, I had scoliosis of the spine and they did a spinal fusion to correct that.
“But my hips are dislocated on a sector and that’s what allows my legs to look like a pair of scissors, because that’s the only way I can get around.
“I learned how to walk like that on my own, to benefit my mobility. When I try to walk straight, I have no balance.
“It does take me much longer to do things in my daily life and I have braces to wear on each leg. I put those on every morning.
“Being only 60lbs, it makes it a little harder to lift heavy things. So I need help with that too.”
Marty believes he was fortunate during his childhood to not receive any bullying in school.
And he remains very thankful to his parents for the constant support they offered.
“My parents are the whole reason I’m able to fully succeed in my life,” Marty said.
“I was very fortunate. I had an amazing childhood. I was never made fun of.
“To me, it was all about the physical challenges, rather than emotional.”
Marty’s mother, Jodie, added: “It was traumatic for us at first because we knew something was wrong when I was pregnant.
“We didn’t know what to expect. We experienced a lot of looks at Marty, but overall, people were accepting of him.
“We did take care of him a lot when he was younger – he needed it. The bathing, the feeding, the dressing. We did all of that.
“I guess we just feel blessed that he’s come this far.”
In his later life, Marty has turned all of his attention to help raise awareness to others who live with rare medical conditions.
He said: “I run a non-profit organisation called the Project Scissor Gait Foundation.
“A few years ago, I started travelling to meet with families who live with Arthrogryposis and Prune Belly Syndrome, because I know how important it is to have other people with the same condition, in the same room.
“To be able to learn from one another and share experiences – it’s vital.
“With Arthrogryposis, online, it says it affects one in 50,000 live births in the world. But with Prune Belly Syndrome, there are only 1,500 people under the age of 18 living in the United States – and around 2,000 known cases worldwide.
“So raising awareness is really important and I’m extremely humbled for the opportunities life has presented to me.
“There’s a lot ahead in my life. I’m only just getting started.