Shore parents race against the clock to save son

James Raffone is in a race against time.

In September 2013, Raffone of Manalapan learned his 4-year old son James Anthony Raffone wouldn’t live past 25.

The boy was diagnosed with Duchenne Muscular Dystrophy (DMD), a genetic disorder characterized by progressive muscle deterioration and weakness.

“We were in complete and utter devastation,” Raffone said when he and his wife Karen learned the news. “We were besides ourselves. To be handed a diagnosis where it’s a terminal muscle weakening disease with no cure, no survival rate to date — our son was handed a death sentence.”

Duchenne affects about 300,000 boys worldwide.

Without a cure, James, now 6, will slowly lose control of his leg muscles. He will become dependent on a wheelchair around 9. He will lose control of his breathing and will need a ventilator. The disease will eventually affect his heart muscle.

Shore woman overcomes Death Race

Raffone said James has been robbed of his childhood. The disease has already started to stunt his growth. He and Karen constantly have to monitor his activity. If James were to break a bone, it would only speed up the process.

“I think about it every minute of every day,” Raffone said.

That’s why Raffone is determined to find a cure. He founded JAR of Hope one year ago in hopes of raising awareness and funds for research, as well as medical treatment.

Since then, JAR of Hope has enrolled schools, the Manalapan police department, and fire departments to financially support their mission to fund research to find a cure.

He’s currently on a 79-week campaign where he travels around to 79 different gyms all over the country to explain this disease to people in the health and fitness environment, trying to garner their support.

Raffone has been doing it for the last 27 weeks, giving more than 60 seminars. He’s even been invited to speak in Canada and Australia.

Last year, he ran in the New York City marathon to raise awareness about DMD without even training.

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On Oct. 23, families are invited to attend Charity Movie Night Under the Stars from 6 to 9 p.m. at The Learning Experience, 65 Business Route 33 in Manalapan. The cost for community members to participate is $30 per family of four and $5 for each additional person. Families will enjoy the movie “Hotel Transylvania” projected on a screen.

All proceeds will go toward JAR of Hope, which has raised just short of $130,000 since its inception.

Raffone hopes one day he doesn’t have to tell his son he might not live past his mid-20s.

“He’s a little prankster. He loves to have fun, he likes to play LEGOs, and dance,” Raffone said. “He likes to just be a little boy.”

“Seeing (James) and other children alike who are suffering...truly seeing these kids and how they are and how they still can smile every day has really inspired me to make sure I can do everything I possibly can to help them."

For more information, visit jarofhope.org or thelearningexperience.com.