Child with rare muscle-wasting disease unable to partake in Fargo Marathon for first time in three years due to weather
FARGO — Kyle Gagner doesn't know how much time he has left with his 5-year-old son, Levi.
Levi was born on Nov. 4, 2013, and diagnosed with a rare form of congenital muscular dystrophy called L-CMD three weeks later. According to the U.S. National Library of Medicine, there are only about 50 affected individuals that have been described in medical literature with L-CMD.
It does not affect Levi's cognitive and speech development, but it's a life-limiting and muscle-wasting disease. Levi can't sit up on his own, can't crawl and has very little head control. He requires physical assistance in every area of his life. There is no cure.
Saturday was the fourth year in a row Kyle was supposed to run the half-marathon at the Sanford Fargo Marathon, while pushing Levi in his wheelchair. The rainy and cold weather, however, kept the two from partaking in the marathon.
"We waited as long as we could to see if the forecast would improve, but the cold and wind are not favorable conditions for our little man," Kyle said.
Levi is the namesake to Levi's Hope, an organization that helps families adjust to life with someone with congenital muscular dystrophy. Kyle and Levi run together to give people hope.
"The prognosis hasn't changed," said Kyle, who grew up in Casselton, N.D., but now lives in Cavalier, N.D. "The message stays the same. Every year we get to do this we are grateful for another year."
Kyle, 33, made Levi go for a run years back, chuckling that Levi really didn't have a choice, since he was in a wheelchair. Since then, Levi is the one pushing Kyle to go for a run.
Saturday was supposed to be the 13th marathon Kyle and Levi have done together. Last year in Fargo, Kyle was dressed as Mario and Levi was dressed as Yoshi. On Saturday, Kyle was supposed to run as Batman and Levi as Robin.
"For a child that has very limited mobility to get out there and have the wind in his face, to be running like that, I know for a fact it makes him smile," Kyle said. "As for Fargo, there's all these people around and people cheering and singing and he really enjoys that atmosphere."
The disease is slowly progressing for Levi. Kyle refers to each setback as "little bummers," but says each is like a punch to the face. Levi's breathing function is decreasing and some of his muscles are starting to contract. The family just found out that he has scoliosis and hip dysplasia.
On Saturday, however, Levi was not going to be a child with a rare disease. He was going to be Robin and dad was going to be Batman.
Each marathon ends with Kyle telling Levi he loves running with him and Levi saying, "I love running with you, too, dad." That will have to wait for the next marathon. The two have already planned to run the Fargo Marathon next year.
"It's the absolute most precious time the two of us have together," Kyle said.