Arthrogryposis multiplex congenita, or AMC, is an extremely rare disorder — but it’s one that Detroit Lakes native Bob Heimark has been living with all his life.
“I was born with it,” he says, adding, “Everything from my knees on down was fused.”
What this means, he added, is that the joints in his knees and feet were almost completely immobile. The entire right side of his body is also affected by the congenital disorder, which afflicts about one in every 3,000 people.
Even after numerous surgeries — 13 of them before he turned age 14, and several more since — Heimark’s body continues to present him with daily mobility challenges.
Most recently, about two weeks ago, the 41-year-old underwent surgery to repair what his doctor called an osteochondrial lesion on his right ankle, which was causing extreme pain whenever he tried to put weight on it.
“The doctor who did my surgery told me, ‘The architecture of your feet isn’t normal at all,'” Heimark said, adding that he most likely will require another surgery soon, to repair similar damage to his left ankle.
His ongoing mobility challenges cause Heimark to use a motorized scooter to traverse all but extremely short distances. Unable to get the scooter in and out of his car by himself — “I can’t lift anything too heavy,” he says — Heimark relies on the help of his wife, Tami, to do so.
Because he and Tami share the same vehicle for getting to and from work, he has to get up extra early to drive over to the high school, drop off the scooter in the parking lot, then take her to work at Essentia Health Oak Crossing by 6 a.m. and go back to the high school to start his day.
They have to go through the same routine, in reverse, at the end of the day — and on her days off, he still has to have her help him unload the scooter at the school, take her back home and then go to work.
One of his colleagues at Detroit Lakes High School — he has worked as an IT technician in the district for more than 20 years now — noticed one morning that Heimark’s scooter was sitting outside in the school parking lot, unattended. She wasn’t the only one to notice, or to ask him about it — but she was the one that decided to do something to help find a way to get him a mechanical lift for his vehicle.
That colleague, DLHS English teacher Mary Kvebak, was the instigator of a fundraising campaign called “Lift Up Bobby” — though the real impetus behind the campaign was her students.
“I asked him if it was OK if I talked to the students in my digital media and film class about it,” Kvebak said. “He said yes, so I did. It was my students who came up with the name, Lift Up Bobby.”
Vicki Gerdes / Detroit Lakes Tribune
“The name is about more than just getting him a lift,” Kvebak explained. “Not only do we want to buy a lift for him, we want to lift him up emotionally and support him.”
Mission accomplished, according to Heimark: Support has been pouring in, not just from the students and staff at Detroit Lakes Public Schools, but from the community as a whole.
“The Knights (of Columbus, for whom Heimark currently serves as treasurer, and has been involved with for many years) are going to host a pancake breakfast for me on April 3,” he said, adding that while the Knights do normally host a monthly breakfast, the proceeds from that one will go directly to the Lift Up Bobby campaign.
At a recent Laker girls basketball game, students from the local Interact club (a junior affiliate of Rotary International) passed around a bucket in the stands during halftime, to raise money for the campaign. By night’s end, they had collected over $900.
A friend of Kvebak’s, Trisha Geffre, who works for ReadySetFund.com, a student-driven online fundraising organization, helped set up a
for the Lift Up Bobby campaign, and the students in Kvebak’s class filmed a YouTube video and Laker Live broadcast with Heimark in order to promote it.
Heimark said that it was one of his IT interns at the high school, Aiden Wass, who interviewed him for the segment, and another IT intern, Noah Hendrickson, who helped with the camera work. Another intern, Zach Olson, helped set up a social media account for the campaign as well.
He added that he was particularly touched when Wass threw in $5 toward a recent ‘Lift Up Bobby’ bake sale held by the 9th grade students, over and above all the effort he had put into promoting the campaign.
“One thing I’ve really enjoyed is seeing the kids come up with these ideas, and watching their ideas manifest,” Heimark said.
Vicki Gerdes / Detroit Lakes Tribune
Working with the kids in the district is part of his job that “I absolutely love,” he added.
Tami, who got to watch the segment being filmed for Laker Live and YouTube, said it was fun to see how excited the kids were with the whole process.
“It’s wonderful seeing the positive things that kids can achieve,” she added.
Heimark says he has no problems sharing information about his condition, either with the students and staff at Detroit Lakes Public Schools or with local service organizations like Rotary, to whom he has made presentations at their regular meetings in the past.
When Minnesota Gov. Tim Walz declared AMC Awareness Day back in 2016, Heimark sat down for a feature interview with the Detroit Lakes Tribune.
One of the reasons he is asked to share that information so frequently, he added, is that AMC is incredibly rare; in fact, one of his past doctors, Dr. Brad Refsland, once said that of the more than 20,000 patients he had treated over the course of his career, Heimark was the only one who had it.
He recalls a story his mother once told him about his first trip to the Mayo Clinic in Rochester for surgery, shortly after his birth.
“During our first meeting with the surgeon, Dr. Rudolph Klassen, he excused himself for a moment, and came back in with about 20 doctors of all ages,” Heimark said. “They’d never seen a case of it (AMC) before.”
He said that learning of an arthrogryposis support group called AMC Support, Inc., had been a revelation for him; the first time he went to one of the group’s conventions a few years ago, in Minneapolis, he found so many people to talk to that he ended up staying longer than intended.
“By the second night, I was trying to figure out how I could stay,” he said. “I never knew anyone else with AMC before, and here we were in a room full of people with varying degrees of it.”
Now, he said, the members of AMCSI have become like an extended family. For more information about the group, visit
.
The campaign is about two-thirds of the way toward its initial goal of $5,000, and Kvebak said that any additional funds raised will go to help with Heimark’s ongoing medical expenses.
Anyone who would still like to contribute can go to the
“Lift Up Bobby” page at ReadySetFund.com
and follow the prompts to make a donation.
Also, proceeds from the Knights of Columbus pancake breakfast set for Sunday, April 3 at the Holy Rosary Parish Center will go toward Lift Up Bobby. Breakfast will be served from 8 a.m. to 12:30 p.m. All are welcome.
https://www.dl-online.com/community/lift-up-bobby-fundraising-campaign-brings-new-awareness-to-detroit-lakes-mans-rare-disorder
