Photos By Hillary Ehlen
Levi Gagner was born on November 4, 2013. Just over a year later, he became one of two people in the world diagnosed with a specific genetic mutation of the extremely rare congenital muscular dystrophy disease (L-CMD). Levi will never be able to sit-up unassisted, crawl, walk or have autonomous movement of his head. His muscles will get weaker faster than they will strengthen. Eventually, his heart and lungs will also be affected by this heinous muscle wasting, life-limiting and ridiculously rare disease. There is no treatment or cure for L-CMD.
“It stripped us of everything that we thought we ever knew,” said Levi’s father, Kyle Gagner.
Gagner and his wife Melissa have four children, James (8), Isaiah (6), Levi (3) and Hannah (2), and live in Cavalier, North Dakota, where Gagner is a Nodak Insurance agent.
“You get to your core and you ask what do we exist for? What is our purpose on earth? What’s our purpose in life?” Gagner said about his reaction to his youngest son’s diagnosis in 2014. “That’s really when our faith came out.”
After news broke of Levi’s diagnosis, the Gagner family received an outpouring of support. Friends and strangers came to their door bearing gifts, completing chores and doing anything to help the young couple’s four children. The Gagner family didn’t cook a meal for six months.
“Instead of being caught in the daily routine, we really got to process what was happening,” said a thankful Gagner, who wasn’t surprised the rural community he moved to with his family in 2010 was rallying behind one of their own.
Stripped to their core and searching for meaning, the Gagner family came to a realization.
“Our purpose and our hope are ultimately found in Jesus,” Gagner said. “That’s where we find our purpose. We’re a child of God, and we exist on Earth to glorify him and to proclaim the message of hope and that’s when we honed in on Levi’s Hope.”
“It stripped us of everything that we thought we ever knew. You get to your core and you ask what do we exist for? What is our purpose on earth? What’s our purpose in life?”
Gagner and his family were believers before Levi’s diagnosis. They had strong faith. They had hope. Now, with the creation of Levi’s Hope—essentially a CaringBridge profile morphed into a Facebook page that was originally created to update friends and family with Levi’s health—the Gagner family had a platform to spread the message: Hope for Levi; hope for a meaningful life and, ultimately, hope for all.
“Everybody needs to be reminded that they have hope,” Gagner said as Melissa watched Isaiah ride on the back of Levi’s electric wheelchair on NDSU’s campus. They were in Fargo for one of Levi’s monthly’s check-ups at Sanford Hospital. The family also travels from Cavalier to Grand Forks for physical therapy once a week, and every six months or so, they see a neurologist at the Mayo Clinic in Rochester, Minnesota.
Anyone associated with the Gagners knows the family has always been active. Before Levi was born, Kyle would strap his oldest sons in the stroller and go for long runs and bike rides. The Gagners went on a road trip to Washington D.C. this summer for the Cure CMD SciFam Conference. Their 3,800-mile road trip took them through 10 states.
Altru’s Spin for Kids in Grand Forks, North Dakota, donated a jogging base that has allowed Gagner to run with Levi. The Kimba seat stabilizes Levi’s head so he can handle the intensity of running. In 2015, at the Wild Hog Half Marathon in Grand Forks, Levi and his dad ran their first race.
“The memories, the experience, the emotion of running with him is like nothing else,” Gagner said. “It goes beyond me achieving a personal goal. It’s now something that we can share. My family can even share in that because they cheer us on at various points, so it’s a family event.”
Recently, Levi and his dad were back in Grand Forks for the Wild Hog Half Marathon. But this time, someone special joined them.
Bill’s World Record Attempt
The Gagner family bleeds green and yellow. Kyle and Melissa are NDSU alumni and Levi’s chair is filled with various Bison stickers. Last season, NDSU reached out to the Gagner family and gave them special access to the Bison football game against Eastern Washington. The family went on the field before the game and ran out of the Bison helmet. They also met with some of the players after NDSU’s overtime victory. The connection didn’t end there.
Earlier this year, the Gagner’s pastor at Cavalier Evangelical Free Church, Bill Crosby, walked into his running partner Kyle’s office.
“I started out trying to break the world record for the fastest half marathon while pushing a wheelchair,” Gagner explained.
“He found out the fastest half marathon pushing a wheelchair is something that he had done every single time that he’s run a half marathon with Levi, so technically, Kyle’s broken it four times,” Crosby said. “He wanted to include me in this so he looked up half marathon records.”
Sure enough, the two discovered the Guinness World Record’s fastest half marathon while wearing full football gear was established in 2015 by Matthew Stevens of the United Kingdom with a time of 1:43.42.
It was a record Crosby wanted to break and the two were ready to break their records together at the Wild Hog.
“Regardless of the uniform, this is just a special thing for this little boy.”
“Then I got the requirements and found out Levi isn’t old enough for the world record,” Gagner said. “Then I said, ‘Well, you still have to do yours.’”
Reluctantly, Crosby, who is a University of North Dakota graduate, decided he was going to attempt the record in Bison football pads and jersey for Levi. He admits now it didn’t take that much convincing. Gagner reached out to NDSU Athletics earlier this summer for football gear and they happily complied.
“Regardless of the uniform, this is just a special thing for this little boy,” said Crosby, who has been training with the Gagners for the race. “We’re trying to add to the experience for him and his life and increase his quality of life with what we can. So we reached out to NDSU and sure enough, they loved the idea.”
Crosby, along with Kyle and Levi, ran the Wild Hog half marathon this September. Crosby successfully broke the Guinness World Record by more than three minutes. Levi was by his side the entire race.
“When you run with them, whether it’s a half marathon or a training run, you achieve more than you ever could imagine running alongside that little boy,” Crosby said. “You see the world in a totally different place, and just seeing the joys and experience when he runs—the air in his face, birds and butterflies, the stop signs—it’s special.
“People will see the uniform, but I really hope they see life in a new way, and they’re inspired by Levi.”
Levi’s story isn’t finished and his father Kyle isn’t done running, either. They plan to be back for the Fargo Marathon next spring.
You can stay up-to-date with Levi on his Facebook page, Levi’s Hope, or his website, LevisHope.com, where his dad posts videos and updates on Levi.
If you feel inclined, you can donate to the Gagner family on their website. Or, you can buy Levi’s Hope clothing at levishope.com/hopestuff. All the proceeds are used to support children with mobility needs.
Levi may not have many things. He may never roll over or stand to run his own marathon, but his impact has made us all find Hope within ourselves. Hope to move forward, find a cure or to simply live in the moment and appreciate those who love you most.
People in the world who have L-CMD
Other Person in the world with the same mutation of L-CMD as Levi
Levi and Kyle Gagner’s time in the 2017 Fargo half-marathon
The Guinness Book of World Records time for fastest half marathon in football equipment
Bill’s time at the Wild Hog half marathon – a new Guinness World Record.