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FNS Photo by John Stennes Jessica Eliason, shown training near Thompson for Monday’s Boston Marathon, and her husband, Jeff, have formed the Larry’s Legends Foundation to raise money for a cure for Fragile X syndrome, a genetic disorder that their son, Larry, has.

Cause to run for: ND woman to run in Boston Marathon to fund research on son’s disorder

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Cause to run for: ND woman to run in Boston Marathon to fund research on son’s disorder
Dickinson North Dakota 1815 1st Street West 58602

THOMPSON — Jessica Eliason ran her first marathon last June.

“It was a bucket-list thing,” she said. “I just wanted to run one while I was still in half-decent shape.”

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Make that two. The 31-year-old will run in Monday’s Boston Marathon. This time, the race comes with a higher calling.

She won’t run the 26-plus miles to add to her list of accomplishments. Instead, she’ll run for Larry, her 2½-year-old son.

Larry has Fragile X syndrome, a genetic disorder that is the most common inherited cause of intellectual disabilities and the most common cause of autism.

The goals of Jessica and husband Jeff are twofold: to raise awareness about the disorder and to raise money for a cure.

They have formed the Larry’s Legends Foundation, with the donations being forwarded to the FRAXA Research Foundation. In a month’s time, they have raised about $20,000, mostly through word-of-mouth.

No cure, but hope

There is no cure for Fragile X, which affects about 1 of every 4,000 males and 1 of every 8,000 females. Larry has the mosaic form of Fragile X, meaning its impact on him should be milder than most cases.

He was diagnosed last September after his parents noticed that he was slow to meet normal development milestones.

For instance, he hasn’t started talking yet. However, Larry does supply the sound effects for the tractors and trucks that he pushes around the living room carpet.

“He pretty much likes anything with a steering wheel,” his dad said.

And, he lights up a room with a constant smile, even when he wakes up from his afternoon nap. He also tolerates 4-year-old sister Cindy’s Barbie doll riding on his tractor.

“He’s the happiest kid that I’ve ever seen,” his mom said.

Twice a week, he undergoes speech therapy, physical therapy and occupational therapy in Grand Forks at Little Miracles, a pediatric therapy and child care center. He has learned some sign language that he uses to communicate with his family members.

The Eliasons draw hope and inspiration from Boomer Esiason, a former NFL quarterback. Esiason created a foundation to fund the search for a cure for cystic fibrosis, a disease of the respiratory and digestive systems that his son, Gunnar, had at birth. In raising $100 million for the cause, the life expectancy of cystic fibrosis sufferers has increased to 35 years old.

“We’re not saying we’re going to raise $100 million,” Jeff said. “But we’re going to try.”

Running has pluses

Jessica remains an active athlete, as she plays in adult basketball and softball leagues, is an assistant coach for the Thompson High School girls basketball team and has competed in 5K, 10K and half-marathon runs.

However, training for a marathon takes a whole new level of commitment. At a minimum, she runs five to six days a week for one to two hours each time. Her alarm for training runs often sounds at 4:30 a.m.

After her morning runs, she heads to her job in Grand Forks as activity and training coordinator at the Ruth Meiers Adolescent Treatment Center, which serves teenagers experiencing mental health issues.

But, running has its pluses, too.

“It’s a stress-reliever and takes my mind off things,” Jessica said.

“We don’t know Larry’s future,” she said. “He’s happy, he’s healthy, he keeps us smiling and he’s making strides forward. That’s what we care about.”

How to help

Donations can be made by going to the Larry’s Legends page on Facebook or by mailing them to 612 Park Drive, Thompson, ND 58278.

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