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JOH set to run 200 miles for Boca Raton boys with duchenne

BOCA RATON, Fla. (CBS12) —

Two brothers battling a rare and terminal disease need extra help getting around.

A complete stranger to them, Jar Of Hope:  JOH is stepping up so the family can travel together.

JOH will be running across New Zealand to raise thousands of dollars for the two siblings with Duchenne Muscular Dystrophy (DMD), to purchase a wheelchair-accessible van for the Horton family who currently need better transportation for the boys.

DMD, which mainly affects boys, deteriorates every muscle in their body, including their heart, eventually leading to loss of life.

Right now, 9-year-old Jacob and 11-year-old Ariel, are wheelchair bound.

If the family wants to go out, their parents will physically pick them up, one by one, into the backseat of the family’s van. It’s a time consuming process, one that is repeated several times a day.

“It’s very challenging,” father Eddie Horton said.

The siblings may now have a chance to do more as a family, thanks to Jim Raffone.

Raffone is the founder of JAR of Hope, a New Jersey-based nonprofit organization dedicated to finding a cure for DMD.

“I’m about to embark on a 200-mile race in New Zealand,” he said. “My goal is to raise enough money to purchase a caravan, that’s outfitted to lift power wheelchairs into the van, so the family can travel together.”

Raffone is up for the seven-day challenge to help the Hortons.

“You’re carrying everything on your back that you need to survive for seven days,” he said. “In New Zealand, we’re running from the Alps mountain, down to the Pacific Ocean and we’re running over 18,000 feet of elevation.”

The founder is also a father of a child with DMD.

“My son, Jamesy, was diagnosed at age four and with that diagnosis came the sentence ‘go home and love your son, there is nothing we can do for him,'” Raffone said. “When I learned about a family in Florida that received the same destructive news, I knew I had to do something to help.”

His act of kindness means the world to the Horton family.

“There are no words to express how amazing it is for someone, who doesn’t even know us, wanting to do this for our family,” mother Liat Horton said.

“It means everything to be able to get this family to enjoy the quality of life they should be enjoying together as a unit,” Raffone said.