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Detroit Lakes man brings awareness to rare disease, AMC

Bob Heimark has never known life without his body continually challenging him. "Deformed bones, stiff joints, slow muscle development..." said Heimark. "I've had 13 surgeries from my waist down."

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Bob Heimark has never known life without his body continually challenging him.

“Deformed bones, stiff joints, slow muscle development…” said Heimark. “I’ve had 13 surgeries from my waist down.”

The 35-year-old Detroit Lakes man is afflicted with what is called Arthrogryposis Multiplex Congentia, or AMC.

Governor Mark Dayton has declared Thursday, June 30 “Arthrogryposis Multiplex Congentia Awareness Day” in Minnesota, and according to Heimark, an awareness day is much needed.

“There have been times when I’ve went into the doctor for something, and when I tell them I have this, they’ve had to go and look it up to see what it is,” said Heimark, whose whole right side is affected by AMC.

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“There’s not a whole lot I can do with my right arm - there’s not a lot of mobility there,” said Heimark. “It affects my jaw, I’ve had some spine issues…”

The lengthy list of aches and pains began to form when Heimark was first born. He essentially had no heels on his feet and both his hands and feet were turned way out, so Heimark started his little life out in castings.

AMC is congenital, and it is rare. Affecting one out of every 3,000 births, its causes are largely unknown, but an inadequate amount of space for the baby to grow in vitro is the suspected culprit for some types. It is also what Heimark suspects to have been his cause.

Different types of AMC cause different challenges, with some being far more severe than others.

“Two years ago I met a guy whose hands were kind of crossed together, and he couldn’t do much with them, so he did everything with his mouth,” said Heimark. “He cooks, he shaves...all with his mouth. It was a humbling experience to see that.”

Heimark says he was teased a bit growing up in Detroit Lakes, but also discovered that there were more kind people than not. His parents, Arlene and Fritz Heimark, devoted themselves to providing their son with the best physical therapy and childhood they could. A handful of good friends also helped - boys who saw past physical differences to see the important things in their lives.

“Baseball and football cards, WWE - the men’s soap opera,” he laughed. “I liked sports - I’d watch the Twins and the Vikings.”

Heimark says there were times when he wished he could be an athlete, but didn’t spend too much time dwelling on what he couldn’t do. He had friends who pushed him around in his wheelchair during times when he was post-surgery, and he adapted to life in the ways he could.

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Taking control

With a good, solid upbringing behind him and a community that grew to love Heimark’s easy-going nature and caring soul, Bob Heimark has managed to take control of what can be a debilitating disease and has instead controlled it.

After high school, he went onto M State in Detroit Lakes, where he earned two associate degrees — one in computer help desk support and one in microcomputer and networking.  He teaches community education classes and works full-time as an IT professional with the Detroit Lakes School District.

As a member of the Knights of Columbus, he chairs the Jose Cole Circus event, is involved in his church, Holy Rosary, volunteers at the Christian music festival, Hope Fest and has even tapped into his thespian side.

“I love to do theater — I’ve had to overcome this, just being able to get up on stage and able to be in front of people and act - but I’m working on my 12th show right now with Shakespeare in the Park,” said Heimark. “I even did some homespun theater where I had to dance on stage. I thought I couldn’t do that, but I can.”

It’s Heimark’s can-do attitude that even landed him a wife.

“I’d watch him do things that you wouldn’t think he can do, but he does,” said Tami Heimark, who met her husband through a bowling league. “I’ve got depression and anxiety, and I was always thinking that I can’t do this or that, but I learned from him that I can do anything. He taught me to not be afraid and stay in the corner hiding, but to come out.”

Today Heimark continues with his busy, busy life, not letting his disability keep him down. He does understand, though, that people who don’t know him won’t know his story and certainly won’t likely understand what is afflicting him.

But now as an adult, Heimark still has a supportive community behind him. His job is now housed out of Rossman Elementary, where he helps with computer issues. When he first moved from the district office where it was all adults into an elementary school setting, he remembers being a little worried about how the kids would react to him.

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“But they’ve been just great,” said Heimark, smiling, and adding that there’s even been teachers who have brought him into their classrooms to teach the students about AMC. Heimark’s help desk is located in the same room as where fifth grades do their morning announcements, and that is something he loves.

“I get to know those kids real well - they get to know you,” said Heimark, who says the kids call him “Bobby” or “Mr. Bob”. And getting to know “Mr. Bob” is likely a lesson in adversity students may not even realize they’re getting.

“I just want everyone to know that a disability can’t stop you,” said Heimark. “You might not be able to do everything the way everyone else does it, but it can’t stop you.”

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