Tony Capecchi

“The world is a book and those who do not travel read only one page.” Since age 18, Tony Capecchi has been chronicling his worldwide travel and outdoor adventures for national magazines, including In-Fisherman and North American Hunter. He has co-hosted “Live Outdoors” on CBS Radio, produced television for NBC and worked on The History Channel’s hit series “MonsterQuest.”

A Run Unlike Any Other

Posted by: Tony Capecchi Updated: October 5, 2013 - 7:27 PM

Of all the ways to enjoy the great outdoors, running has always struck me as the most painful.

I love canoeing, kayaking, hiking and biking, but the mere thought of running leaves me gasping for air. Despite that, I will be outside running on Saturday, Oct. 12 and venture to say that you, dear reader, should do the same.

Allow me to explain.

My good friend, Matt Zechmann, 29, is battling an exceptionally rare, life-threatening form of cancer which has no known consistent cures. It’s called a Desmoid tumor, and because it is so rare––only two out of every million Americans are diagnosed with it each year––there is absolutely no government funding available to fund research for its cure.

Rather than idly accept his unfortunate fate, Matt decided to organize a fundraiser 5K Run/Walk to raise money to help Matt and others who share his frightening prognosis. The first-annual “Desmoid Dash” will take place at St. Thomas Academy in Mendota Heights on Saturday, Oct. 12 at 9am.

Matt’s Story

I’m lucky to be a journalist. I talk with folks from all walks of life and in the course of doing so I meet some pretty remarkable people. But I don’t need to look any farther than my old high-school buddy Matt to be inspired.

Matt was diagnosed with a Desmoid tumor in 2009, after being violently ill off and on for roughly a year. Matt, who competes in national BBQ and rib competitions and had previously been a loyal friend to food of all sorts, suddenly couldn’t keep any food down. Doctors said it was digestive issues or acid reflux––one doctor saw the rapid weight loss and near-daily vomiting and wondered if Matt was bulimic. But his mother, Sue, knew it was something more severe and was relentless in pursuing the true answer.

Finally, the tumor was discovered, yet nothing could be done. The tumor was wrapped around critical organs in Matt’s abdomen, making surgery incredible risky. One well-respected doctor opened Matt up to attempt to remove the tumor, but quickly aborted surgery and regretfully told the Zechmanns they “would need a wizard” to do the surgery.

“A Desmoid is not hereditary and it is incredibly rare,” explained Matt’s mother, Sue, who has become a passionate advocate for those with Desmoids. “It’s difficult to understand why Matt has been touched by this disease, but we can do our best to help find good medical care for Matt and to advocate for others with Desmoids.”  

Sue devoted herself to the cause and found a world-renowned surgeon at the Mayo Clinic––the “wizard” they needed for such an extremely risky operation––and Matt underwent successful surgery in 2010. A year later, however, the tumor returned, as happens with 25 to 40 percent of all Desmoid tumors. Matt has since undergone four rounds of chemotherapy, which have failed to shrink the tumor.

The chemo has done nothing, however, to shrink Matt’s incredibly positive attitude.     

“I feel very lucky,” Matt said. “Even with taking chemo and all the negative effects of this tumor, I have many wonderful things going on in my life, including an amazing support system of family and friends.”

According to his family and friends though, Matt is the amazing one.

“Matt has truly made me a better person, and I feel really fortunate that he is my brother,” said his younger sister, Nicole, who is leading the volunteer committee of 20-somethings organizing the Desmoid Dash 5K. “He is an inspiration. I continue to be amazed by his positive attitude and outlook––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.”

Matt and his younger sister Nicole

Matt’s mother echoes Nicole’s sentiments.

“Matt doesn’t complain about his plight,” Sue said. “He continues to be himself: a gracious, generous, unassuming and funny guy.”

Putting Others First

A moment that epitomizes Matt's attitude occurred at our mutual friend’s wedding in 2011. Matt and I were sitting around at the groom’s dinner the night before and another good friend of ours asked Matt if everything was OK with his health since his last surgery. Matt lied to us and said yes, everything was good.

We gushed over how happy we were to hear that report; Matt smiled graciously and subtly changed the subject. A few days after the wedding, Matt called me and broke the news: Things were not good. The tumor had returned, and Matt would be forced to undergo chemotherapy.

In fact, Matt had received this devastating diagnosis just days before the wedding, but did not want to cast a shadow over our friend’s big day. Instead he lied and smiled and celebrated the joyous occasion of his friend’s wedding with laughter and dancing.

I am still blown away by how he does it.

Running For More Than Research

The stated goal of the inaugural “Running for Research: The Desmoid Dash” on Oct. 12 is to generate awareness and raise $25,000 to fund research for the disease. If just a few more people donate online or sign up for the 5K the group will hit that $25K goal, but in many ways this race has broader goals.

“At the point we decided to do the 5K, Matt’s health was relatively stable,” his sister Nicole said. “But shortly after we announced the event and began planning it his situation progressively got worse. This event has been a blessing because it gives Matt and me something positive to focus on. Matt was in the hospital the other week for testing, and when I’d go to visit him the first thing he’d ask is, ‘How many people have signed up for the run today?’”

To Matt, each registered runner means another person who cares. “I don’t know how somebody could deal with this disease without the support of the community,” he said. 

Folks who love the outdoors will love the 5K’s course; the run will wind around Rogers Lake with fall colors on full display. Sports fans will also find the 5K interesting, with the event starting at St. Thomas Academy’s brand-new athletic center and finishing at the 50-yard-line of what some say is the state’s finest high school football field.

Of course, this 5K isn’t about running, the outdoors or sports.  

It’s about helping to save the life of a guy who has already inspired so many others.

Participants can register in advance for the Desmoid Dash 5K at https://www.runtheday.com/registration/race_info/20482 for $25. Online donations can also be made at the website.

The race takes place at St. Thomas Academy in Mendota Heights at 9am next Saturday, Oct. 12. Registration for the 5K is also available on-site prior to the run for $35.

To "Like" the Desmoid Dash Facebook page and show the Zechmanns your support, please visit https://www.facebook.com/DesmoidDash5K

The Zechmann family on vacation. From left to right: Matt, Nicole, Sue and Jim.

 
 
 
 
 

ADVERTISEMENT

Connect with twitterConnect with facebookConnect with Google+Connect with PinterestConnect with PinterestConnect with RssfeedConnect with email newsletters

ADVERTISEMENT

ADVERTISEMENT

ADVERTISEMENT

ADVERTISEMENT