‘We fight through this every day’: Yarmouth father teaches son’s classmates about child’s rare disease

Brendan Twist | The Forecaster
Posted April 09, 2014, at 12:29 p.m.

YARMOUTH, Maine — Jared Conant’s fourth-grade classmates didn’t understand why he had trouble on the playground and was slower than them in gym. They didn’t get why he walked on his tiptoes and struggled to get up off the floor.

They’d never been taught about Duchenne muscular dystrophy.

So Jared’s father, Barry Conant, set out to change that.

“Kids don’t want to play with someone who’s different,” Conant said. “Most of it’s because they don’t understand. I wanted to educate them about the changes he’s going through so they can help him through those changes.”

During the past two weeks, Yarmouth Elementary School has held an information session and physical education activity for its fourth-grade classes to teach them about Duchenne muscular dystrophy, a progressive genetic disorder that causes muscle degeneration and affects one in 3,500 boys.

In the process, the school raised more than $2,000 for the Muscular Dystrophy Association of Maine.

“I think now they have a greater appreciation for how [Jared] struggles through each day,” Conant said. “They have a far better understanding of what he’s gone through and what he’s up against in the coming years.”

Conant met last year with administrators at the school to talk about how they could educate Jared’s peers about his disease.

“At first we had some mixed emotions about it because we have other children here who have other disabilities,” Principal Betsy Lane said. “But knowing that the children are going to grow up with Jared, we really wanted them to have an understanding of his disability, and we thought it would be a good time for them to be educated about it.”

At the education session, hosted by the school nurse, Conant showed students the splints his son wears at night. He taught them about the stretching exercises he does several times a day and the unpalatable medicine he takes. He also answered any questions the students had.

A week later, the fourth grade gathered in the gym for a series of games and activities designed to raise awareness of Duchenne muscular dystrophy. The event served as the culmination of a fundraising campaign for parents and students to support DMD research and services like Camp Waban in Sanford, which hosts a week-long summer camp for children with the disease.

“The kids were all having a good time,” Conant said. “They’ll have good memories of a day like today, and that creates positive associations.”

It’s been a tough road for Conant; Jared’s mother died of breast cancer in 2008. But he has dedicated himself to supporting medical research and serving as an advocate for the Muscular Dystrophy Association in Maine. And he draws inspiration from his son, an upbeat, energetic child, the kind who occasionally gets in trouble for talking too much in class.

“We’re positive people,” Conant said. “We fight through this every day. My son gets up every day and smiles. He’ll melt your heart.”

Jared certainly smiled during last week’s activity. He hustled from one activity to the next, dancing, striking yoga poses and playing gorilla-ninja-cowboy, a full-body variant of rock-paper-scissors. He was beaming from beginning to end.

“It’s been fun helping the kids understand what I’m going through,” he said.

 

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