A Conversation with a Rare Breed: Marty Sheedy

Written By Jessica Golich, Photography by Joe Gall 

unspecified-1

 

In the contemporary world, every moment is a grandiose battle for the survival of the fittest. Fundamentally, it is often demonstrated that absolute gain stems from relative personal attainment, but transcending this human instinct through a battle that is one generously devoid of solidarity has been seemingly effortless for Detroit hero, Marty Sheedy. An ever-changing society calls for ever-changing and exemplary leaders beyond theoretical guidelines and lofty ideations, and the living role model and real life example worth emulating that Marty Sheedy has cultivated himself into is profoundly distinguishable and honorable. As rare as it is to stumble upon a formidable individual as such, Marty was born with multiple rare congenital deformities including Arthrogryposis & Prune Belly Syndrome, which is a disorder characterized by partial or complete absence of the stomach and abdominal muscle. It is indisputable that with the rising burden of debilitating diseases, hereditary conditions and physical disability along with the demand for health care, the advancement and rise of medical technology and technical advances in care is an outstanding accomplishment by the medical community. Even with the seemingly endless variety of major health challenges faced worldwide, there are some particularly unusual occurrences and medical miracles that fructify astounding results. It is evident through Marty’s infectious character and disposition that his rare conditions have served as a tool leading him to spiritually and humanely climb to the peak of the mountaintop and rather than anticipate his descent, enjoy the view. The respect, admiration and affection that Marty generously and rightfully receives from every single life that has the honor of being touched by his presence is commendable, and the noble soul with a benevolent heart has stepped outside of himself to educate, promote, and provide research and funding opportunities for people affected with Scissor-Gait, Prune Belly Syndrome and Arthrogryposis to help them live more meaningful and productive lives. It’s 7:00pm on a Wednesday evening and I am touched by the internally penetrating impact brought to life by sharing a simple cup of coffee with Marty and his brother at heart, Drew Drialo. Although Marty’s multiple diagnosis’ carry the capacity to be a significant barrier that could potentially affect all aspects of his precious existence, the attitude of gratitude cultivated within the warrior spirit that coruscates throughout a room has led him to create a fulfilling and exceedingly meaningful existence abounding with purpose and persistence.

unspecified


  • Prune-Belly syndrome, also known as Eagle-Barrett syndrome, is a rare disorder characterized by partial or complete absence of the stomach (abdominal) muscles, failure of both testes to descend into the scrotum (bilateral cryptorchidism), and/or urinary tract malformations. The urinary malformations may include abnormal widening (dilation) of the tubes that bring urine to the bladder (ureters), accumulation of urine in the ureters (hydroureter) and the kidneys (hydronephrosis), and/or backflow of urine from the bladder into the ureters (vesicoureteral reflux). Complications associated with Prune-Belly syndrome may include underdevelopment of the lungs (pulmonary hypoplasia) and/or chronic renal failure. The exact cause of Prune-Belly syndrome is not known.
  • Arthrogryposis multiplex congenita (AMC), or simply arthrogryposis, describes congenital joint contractures in two or more areas of the body. Children born with one or more joint contractures have abnormal fibrosis of the muscle tissue causing muscle shortening, and therefore are unable to perform passive extension and flexion in the affected joint or joints.

Jessica – First and foremost, who is Marty Sheedy?

Marty – I am a 30-year-old male. I represent goodness, charity, hope, love, and compassion. I want to be an example of light in the world. There is a lot of darkness and evil, but there is so much more good in the world. And when I look back down the road, that’s what I want my life and my experiences to show. I want to be able to say that I made an impact, not only within the community that I represent, but as a whole. I create this through motivational speaking and sharing my life through social media, because the doctors said that I wouldn’t be able to do certain things.

Jessica – When did that information come to light for you throughout your life? Pertaining to the doctors stating that you were not able to do certain things?

Marty – Well, when I was born, I was misdiagnosed with a condition called Werding-Hoffmann disease. It’s a condition where they told my Mom and Dad that I wouldn’t live past the age of two years old, and if I did, I would have no quality of life.

Jessica – No quality of life in what sense?

Marty – The doctors said that I would be in a vegetable state. No movement.

Jessica – I assume that this was brought to your attention later in life; how did your family initially react to that?

Marty – Yeah. It was hard for them. But, they realized that as time went on, a couple months later, it was a misdiagnosis. And that is when they found out that I had the Prune Belly Syndrome.

unspecified-6

Jessica – Wow. So it was discovered through the misdiagnosis that it was Prune Belly?

Marty – Yes.

Jessica – Please further elaborate on exactly what Prune Belly Syndrome is.

Marty – Prune Belly Syndrome is a lack of abdominal muscle. So, my stomach was literally like a prune, shriveled up. When I was born, they did a tummy-tuck surgery to keep my organs intact. You could literally see my bowel movements when I was little.

Jessica – And this is something that your family traveled with you along the way between the age of zero and three years old to ensure that you were rehabilitated and restored to the best health possible?

Marty – Yes. My Mom and Dad had to make a lot of decisions. They were guided, spiritually. They prayed a lot; they really had to make some tough decisions.

Jessica – Wow. When did you come to the realization and/or sense of enlightenment in which you acknowledged the severity of what you had encountered in your infant years?

Marty – When I was young, I was always aware that I couldn’t do things that other people could do, but that never bothered me. I just knew that I was different, but I still interacted with the world. For instance, going to school, I always had friends.

Jessica – Marty, I went to school with you; you were a superstar. Everyone was intrigued by your aura and your kindness as a human being. You shed a light upon how it is a choice to allow a disability to take take away from your everyday experiences through not allowing it to.

Marty –  Yeah. Right. I always realized what I could do rather than what I couldn’t do. I realized when I was younger that if I could talk to people and explain to them what was “wrong” right away, it would make me feel more on the same level. I know I walk a certain way for a reason, but they don’t. It’s like curiosity killing the cat. And then those people just looked at me like I was everybody else. I educated myself behind my conditions. I know that if I were you, for instance, I would look at me and wonder, “Why does he walk like that?”

unspecified-5

Jessica – It’s only human nature. I’m curious; are there any misconceptions or assumptions around Prune Belly that you’d like to shed light upon?

Marty – Yes, with Arthrogryposis and Prune Belly. For instance, parents can find out if their child has either instantly.

Jessica – Do you perceive so now potentially because of the medical advances over time?

Marty – Yes. Doctors have told many parents to terminate the child because that’s what they have learned about or read about in texts back, that Arthrogryposis will lead to a poor quality of life or Prune Belly could equate to all of these things…..

Jessica – Right at birth?

Marty – Yes, right at birth. I have talked to parents that have children that are doing fine with these disabilities, and living awesome lives, but the doctors initially told their parents otherwise.

Jessica – This is going to be a very powerful question. Have you imagined if your parents would have made the alternative decision?

Marty – Yes. That would be….. *silence* unspecified-7

Jessica – Actually, I perceive that is a terrain you cannot tackle, because you are here now. Potentially more so from a spiritual aspect…

Marty – Yeah. This is exactly why spreading awareness through my life and the foundation shows people and the doctors that we still live awesome lives. Through attending different conferences pertaining to Prune Belly and Arthrogryposis, I have been able to see many other people that are just like me.

Jessica – How often do you attend these conferences?

Marty – Prune Belly is every other year, and Arthrogryposis is every year. It’s in a different city every year, so families that can’t necessarily travel all the way to the West Coast can have their opportunity come about.

Jessica – You have been a speaker at these conferences. Tell me more about that.

Marty – I was able to spread awareness and educate people about my mentality of growing up with Arthrogryposis and the social boundaries, etc. For instance, there was a seventy year old individual in attendance and a newborn in attendance.

Jessica – Marty. It is so commendable that you started your own non-profit organization, Project Scissor Gait Foundation. Let’s dive into your intention and purpose behind bringing the foundation to life.

Marty – Well, there are two support groups out there that put on the conferences. I always wanted to to start a foundation that is a support foundation for them. I wanted to have my own foundation to help them. Project Scissor Gait Foundation provides medical equipment, school supplies, and more. This past year, we were able to sponsor 180 people with Arthrogryposis, and we compensated for their registration fee to attend the conference. And that was because of Jimmy John’s that we were able to help….

Jessica – So, you are partnering with different companies? Are you partnering with anyone local in Detroit?

Marty – Well, Kid Rock, who is also from Detroit, has helped tremendously and donated….

Drew – A lot of people have helped. A lot of local musicians, the art community. Marty also works out of Assemble.

Jessica – That’s great. Being in that atmosphere and energy; a space to create.

Marty – Yeah. Those are the people who have really helped. Right now, with my kidney, I am waiting for the new year to get my kidney and deal with that….

unspecified-4

Jessica – On the kidney transplant note, I am curious Marty, as to how what you are currently undergoing has come about at this time of your life.

Marty – About a year ago, I had a bladder infection, and it was the first one I have ever had, even though Prune Belly does affect the bladder. It was at that time that they tested my creatine level which was high as well as other levels. At that time, we actually went to the Prune Belly conference, and I talked to a couple people and really realized that it was my Prune Belly and my kidney was failing. There started to be signs of me slowing down…..

Drew – Mainly just energy levels, which we didn’t initially notice. It took us awhile for us to link it back to his kidneys. But, recently more so it has become very obvious.

Jessica – Marty, what is your percentage of remaining kidney function at the moment?

Marty – 17%

Jessica – And for a healthy functioning kidney it is supposed to be at…

Marty – 70-80%

*silence*

Jessica – Drew, you are involved within this because you chose to get yourself tested to see if you were a match to donate a kidney…

Drew – Yeah.

Jessica – Honorable. It gave me chills when I saw what you had posted on Facebook pertaining to that, Drew. I literally took a step back and felt that; that is beyond stepping up to the plate.

Marty – Yeah, it is really, really powerful. And within the universal connection of it all, Drew and I met because of Prune Belly….

Jessica – Because of Quinn, right?

Marty – Yeah. Before I ever even knew anybody else with Prune Belly, it was that little boy. Quinn is seven years old now, and he also has Prune Belly. I am still in touch with him. Actually, he came to my recent 30th birthday barbeque at my parents home. He is living in Ann Arbor now. Back to my kidney, it’s been a year now, and my kidney functioning has dropped from 50% down to what it is now.

Jessica – This is going to be a bold question, Marty. Has this brought upon a state of fear in your life?

Marty – No.

Drew – No, not at all.

Marty – Not even a little bit. I know that all will be great. I have met so many people who have Prune Belly that have survived this and have had multiple kidney transplants, and they are doing great. I know my mentality and I know my strength within recovering, and this is just another part of my journey. This is going to allow me to help more people. I have been lucky to be 30 years old with one kidney and have done everything that I have done so far and just now come across this.

unspecified-8

Jessica – Human beings create that fear. You have surpassed and squashed that fear so long ago, Marty. Your belief in your recovery and ability to do so is setting an example for others.

Drew – Yeah. I believe that faith plays a part. You know, if you are faithful and believe in something unconditionally, there is nothing that can break that. Faith can’t be broken. Even if a little part of you feels like a piece of the puzzle may not work out, then you don’t actually have faith, you know? You’re just hopeful. Faith is the most powerful thing that we can have within our lives.

Marty – You know, I have been so lucky. There are about 10-15 people who would be willing to get tested to see if they are a match, and that is the ultimate blessing. There are people that wait five to seven years for a transplant……

Drew – Even ten years.

Marty – And this is an opportunity to shed light upon those willing to help. It’s an hour and a half surgery, and a month of recovery; and through others enduring that process, they are giving the gift of life to people like me.

Jessica – But in the grand scheme of things, for instance, Drew, if that individual is you, that’ll influence the rest of your life.

Drew – Yeah, absolutely.

Marty – Jessica, it really also brought upon a sense of reality behind life and death; you need kidneys to live. And when you really think about that, it makes you step back and realize the big picture even more.

Jessica – Marty, you have been very transparent about your journey on social media, etc. What do you desire that others take away from your vulnerability?

Marty – All that I have gone through has led me to this place of transparency.

Drew – Yeah. Hopefully with Marty being vulnerable, it’ll inspire other people to feel comfortable about being vulnerable with themselves. I think that a lot of people are scared to talk about their feelings these days. And now, when people are open and vulnerable about how they feel, even if they don’t have any influence, I think that it affects other people around you. Sometimes people may look at you a little different, but from my experience, it just makes the bonds tighter. And hopefully, the people that Marty is reaching will have the courage to express themselves more, and that spreads.

Jessica – Powerful. Marty, do you have any words of wisdom that you would like to share with any individual currently going through anything similar that you have encountered?

Marty – Yes. A perfect example is that my doctors at Shriners told me to walk cross-legged because it helps me, but, my school’s physical therapist at the time always made me walk straight-legged at school. That wasn’t my natural. My natural is to walk cross-legged. Of course, being in elementary school, you listened to people in that position. But, that is one major example showcasing that I kept walking my way, and that led me to all of these things in my life today, in which I continue to do things my way. There are people who told me to “walk the normal way”, but what is the normal anyway?

unspecified-2