A year ago, it didn’t look like Matt Zechmann would be around to see the 2nd Annual Desmoid Dash on October 11, 2014. For five years my old high school buddy had been battling an exceptionally rare and potentially deadly form of cancer, a desmoid tumor. He’s survived several close calls over the years, but catastrophe struck last November.
Major complications followed a 13-hour operation at the Mayo Clinic to remove a football-sized desmoid tumor from Matt’s abdomen. On one horrific night, just weeks before Matt’s 30th birthday, he started hemorrhaging blood at an incredible pace and family members were warned this would likely be the end.
But a diverse team of Mayo’s finest doctors saved Matt that night and he beat the odds––despite losing a staggering 750 milliliters of blood––to earn an appropriate nickname among the Mayo staff: Superman.
And while the original Superman worked alone to save lives, Matt is working with people across the Twin Cities to try to save lives––his own, and others who suffer from the same incurable disease.
He and his younger sister, Nicole, organized the inaugural Desmoid Dash 5K Run/Walk last year to raise money for researching a cure for desmoids, which affects two out of every one million people in the U.S.
“I have come a long ways on this, but it’s still a very tough thing for me to ask people to donate their money or time to benefit me,” said Matt, who is funny, charming and gregarious, but never wants to be the center of attention. “I know there are a lot of great causes out there, and there are people who face worse outcomes and odds than I have faced. This community boosts my spirit because I think about my tumor constantly every day––when it will come back, how aggressive it might be growing, the side effects it could cause again.”
“I also think about how the disease has already changed my life a great deal,” said Matt. “The scariest part is the realization that this is a part of the rest of my life. It’s really scary knowing that none of the current treatments for desmoids worked for me and that I can no longer undergo another surgery. But seeing people signing up for the race, or liking the Desmoid Dash Facebook page, or posting a photo, is a huge boost mentally.”
Because the disease is so rare, virtually no government or public funding exists for research. The only chance Matt and others with desmoids have is through fundraisers like the Desmoid Dash.
The Run––How You Can Help
This year’s 5K Run/Walk is on Saturday, October 11 at 9:00am at St. Thomas Academy in Mendota Heights, where Matt graduated high school.
“Matt is one of our own,” said Mike Maxwell, Director of Alumni Relations at St. Thomas. “We want to do whatever we can to help Matt, and we’re honored that the Zechmanns want to host their event at our school.”
“Following the surgery last winter, Matt will no longer be able to tolerate any more surgeries, so finding new, more effective treatments is our only hope if he has a recurrence,” said Nicole, noting that 70% of desmoid patients who already had one recurrence will have future recurrences. Matt’s tumor has already re-occurred once within a year of being surgically removed the first time. “The work we are doing truly could be what helps saves Matt’s life, and the lives of other desmoid patients.”
“As Matt’s mother, I’ve felt helpless,” says Sue Zechmann. “Conversely, it’s empowering to try to make a difference through this event, not just for Matt but for the thousands of others afflicted with this rare cancer.”
Last year, Nicole led a group of Matt’s friends to organize the event and the results were astounding. More than 300 runners came out to the event, and some $50,000 was raised for desmoid tumor research.
“This event is a constant reminder that I have an army of great people supporting me,” said Matt. “Part of why Nicole and I started the Desmoid Dash was to take something negative and turn it into something positive.”
This year, Matt, Nicole and their team of friends hope to raise $100,000 for research.
Touched by Superman
I know Matt doesn’t want to be a superhero, but he is one. The affect he has on others is profound. “The Desmoid Dash is going to be Matt’s legacy,” said Matt’s friend Ryan Naughton, an active member on the Desmoid Dash committee. “Since his diagnosis, he has raised almost half a million dollars for the Desmoid Tumor Research Foundation.”
“But more than that, Matt has taught me to live every single day. Matt’s journey has been truly inspiring me and all of my friends. How can he go through all of his struggles, surgeries and complications with a smile?” Ryan asked in awe. “Even during Matt’s weakest moments, he was happy, positive and witty. Even when Matt could only stay awake for a few minutes at a time, he wanted to know how other people were doing. He truly cares about everybody he knows.”
The Zechmann family has countless stories of Matt’s incredible grace. “The day following Matt’s surgery (last winter), Matt could barely speak,” recalled Sue. “He struggled to whisper to me, ‘Mom, please thank the nurses for me because I can’t.’”
“While fighting for his life in the hospital, he managed to remain grateful, positive and maintain his sense of humor,” Nicole said. “When praying with hospital chaplains, he would always pray for others, but never for himself. It was remarkable.”
Of course, there were lighter moments, too, thanks to Matt’s indomitable spirit and sense of humor.
“I remember Matt coming out of his 13-hour surgery,” recalled Nicole. My parents and I walked into the room and the nurse asked Matt if we were his family. He kept a straight face and said, ‘I’ve never seen these people before in my life!’”
“He is an inspiration to me. I’ve always looked up to Matt, but the way he handles this situation has made me recognize even more so what an incredible person my brother is,” Nicole said. “Matt has truly made me a better person, and I feel really fortunate that he is my brother.”
I am certainly fortunate that Matt is my friend––and that I know someone with his extraordinary grace and strength. And so, while this story isn’t about traveling or the great outdoors, it’s a story that must be told.
Because if a person like Matt doesn’t deserve our help, who does?
For his part, Matt continues to be realistic yet optimistic. “Sometimes the reality of there not being a cure sets in,” Matt told me quietly. “But truthfully, I feel very lucky. I have many wonderful things going on in my life, including amazing family and friends.”
To sign up for the race, click here.
For more general info on the Desmoid Dash 5K Run/Walk, visit www.desmoiddash.com.
To "like" the Desmoid Dash Facebook page to show Matt your support, visit https://www.facebook.com/DesmoidDash5K
Above: Matt and his sister, Nicole, thanking the 300 people who participated in last year's Desmoid Dash.
Below: The Zechmann family (from left to right: Jim, Sue, Nicole and Matt) at a recent fundraiser run in Philadelphia which also raises money for the Desmoid Tumor Research Foundation.
The shirts were a gift from Matt’s employer, Schneider National. While recovering from surgery, Matt missed eight straight months of work. His co-workers had a surprise waiting for Matt on the first day he was healthy enough to return to work. When he walked into the office for the first time in three-quarters of a year, all 150 office employees were wearing shirts they created. The shirts read: “It came, he fought, he conquered, Zechmann Strong.”