MANALAPAN, N.J. (WCBS 880) — Jim Raffone would do anything for his 13-year-old son James — he's even climbed a mountain for him.
"We've gone up to Mount Everest," he said. "We set a world record up there by doing pushups at 18,365 feet."
He's also run 171 miles through the Grand Canyon.
"You do about 35-plus miles a day and you carry everything on your back to survive, from food to toiletries to clothing, and it's self-supported," Raffone added. "That means that nobody can help you get from point A to point B throughout your day."
He tackles these grueling challenges because his son cannot.
Jamesy, as he is known, is in a wheelchair. He has Duchenne muscular dystrophy, a progressive muscle wasting disease.
"This disease wants to claim my son's life," Raffone said.
He's fighting to prevent that.
"Oh my God, he's just an amazing little boy with a quick wit who wakes up every day with a smile on his face," Raffone said.
Through his nonprofit charity, JAR of Hope, Jamesy's father undertakes these extreme endeavors to raise awareness and raise money for trials, research.
"Jamesy has shown progress. Statistically, he has shown that we have slowed the disease down," Raffone said. "He is not cured by any means, and I'm not staking claim to that, but what I am saying is that by the addition of stem cells and hyperbaric oxygen therapy, by adding proper nutrition and supplementation to his diet that Jamesy is going very well."
That gives him hope.
"He's just the sweetest little and he shouldn't, no child should have to suffer the fate that is set before him," Raffone said.
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