Maggie Folkestad’s father died of a desmoid tumor when she was 6 months old, but the 21-year-old college senior shares an undeniable connection with him: a desmoid tumor of her own.

Out of a million people, only four are diagnosed with the cancer-like tumor each year, but in her family, Maggie is the fourth consecutive generation to suffer from desmoids.  

“I wonder what it would have been like if my dad had access to the medical care I have today,” said Maggie. Desmoids are identified more effectively today, but there are still no known cures for the cancer-like tumors. The disease receives no research funding from the government because it is so rare.

“To me, desmoids don’t seem that rare because I live with them,” Maggie said. “I actually have three tumors, which are interconnected. The largest is the size of a softball.”

Maggie’s tumors were caused by Gardner syndrome, which is hereditary. The disease is characterized by polyps inside the colon, tumors outside the colon and the tendency to be passed down from one generation to the next.

The disease has taken Maggie’s biological father and her great uncle. It has also caused her to be poked and prodded for medical tests since she was a kid; colonoscopies started at age 10. When Maggie turned 16 and got her driver’s license, she developed pre-cancerous polyps which forced her colon to be removed. But for all the damage the disease has wreaked, it has failed to hinder Maggie’s spirit.

“It doesn’t change who I am, or how I live,” Maggie said. “I don’t let it.”

The Edina native is taking a stand, not only by continuing her education at the College of St. Benedict this fall, but also by putting together a team to run in the Desmoid Dash 5K on Sept. 19 to raise awareness and money for desmoid research. All monies raised at the Desmoid Dash will go directly to the Desmoid Tumor Research Foundation and the current study at Duke called “Collaboration for a Cure.”

The third annual fundraiser takes place at St. Thomas Academy in Mendota Heights at 8:30am on the third Saturday of September.

Last fall, Maggie ran in the race along with a handful of other desmoid survivors, including Matt Zechmann, who created the event in 2013 to raise money for research. “When I first had chemo I sat at home and I moped around,” said Zechmann, 31. “Then I realized there’s another level I could go to, and the Desmoid Dash gave me something positive to channel my emotions and energy into. Plus there’s a direct correlation between the money we raise and the research getting done.”

Zechmann and Maggie shared a doctor at the Mayo Clinic and have become friends and supporters of each other.

“You have to look out for each other,” Zechmann said. “It’s not about sharing war stories or comparing scars, it’s about having the knowledge that someone else has dealt with this same type of thing. Maggie is a genuinely nice, good person from a supportive family, and she’s been dealing with this thing since such a young age. I get strength in my fight from hearing about hers.”

As for Maggie, she is captaining a team at this year’s Desmoid Dash to help give back the support she has received since she was a teenager. “It always amazes me how much people are willing to help,” said Maggie, who wants to become a patient advocate at Children’s Hospital after graduating college. “The support I receive blows me away. It’s a weird feeling.”

While Maggie is remarkably comfortable with medical terms and tough realities––she candidly describes why surgery is not a viable option for her if her tumors take a turn for the worse––she struggles at times with the impact her disease has on her family.

“I don’t exactly feel guilty,” she said. “But having to put my parents through this isn’t something I like.”

Maggie’s mother, Sheila, marvels over her daughter’s grace. “I was so sad when Maggie was diagnosed because I knew what that could mean for her,” said Sheila, who buried her husband and her husband’s uncle in a one-month span. “It means so much to us to have the support of our family and friends. They have been so good to us throughout all of Maggie’s health issues.”

Maggie’s grandfather, Dave Ellingson, 80, is a desmoid patient himself. “I am proud of Maggie’s fortitude, and that her disease hasn’t diminished her wonderful personality,” he said. “Maggie is so much like our [late] son. She is so spunky and smiley and outgoing.”

“People always tell me my dad was a very fun and loving person,” Maggie said. “Even though I don’t remember him, I think I have a similar personality to him.”

Ellingson recalls a time when Maggie’s father was still alive and worked in Dublin, Ireland. Ellingson visited him in Ireland and they toured a castle. “My son was ahead of us on the tour and hid behind these big, formal curtains to jump out and surprise us, but he didn’t realize we could all see his shoes sticking out beneath the curtains.”

“Maggie has this fun personality, too, but she’s also a fighter. She’s going to graduate from college and do great things––she’d be a great patient advocate because she’s a good listener,” said Ellingson, who credits Sheila and her second husband, John, for how they’ve supported Maggie.

In Ellingson’s case, the support has gone both ways. “Maggie went to Mayo in 2009 and I held her hand as she laid in the hospital bed,” said Ellingson. “The next year, I had two heart attacks. I was in the hospital and Maggie came and held my hand and I said, ‘Maggie, we’ve changed roles.’”

Grandfather and granddaughter will be supporting each other on Sept. 19, as they participate in the Desmoid Dash.

“I’ve had one tumor removed, but I still have another desmoid tumor they can’t remove, and if that tumor starts to grow again, I don’t think the doctors know what to do,” said Ellingson, who lost his son and his brother to desmoids during a 30-day stretch. “I hope with more research they can eliminate Gardner syndrome and desmoid tumors.”

Maggie hopes the same, and is encouraging others to sign up for the Desmoid Dash 5K, or to donate online to the cause. You can form a team for the event, but most sign up to run or walk as individuals.

Meanwhile, the unusual connection Maggie shares with her late father remains a big part of her life, but she refuses to let it define her. “Our team is doing this run to honor my dad, and we’re also doing it for me, and for others with desmoids.” 

Click here to register for this year's Desmoid Dash. To make a tax-deductible donation to the Desmoid Tumor Research Foundation, click here. Please indicate your donation is tied to the Desmoid Dash. For more information on the event, visit DesmoidDash.com.