Seven years ago, Jim Raffone, Founder/CEO of JAR Of Hope foundation for Duchenne muscular dystrophy, approached his board with a plan to raise funds by climbing Mount Everest. But the board denied the request.
“JAR of Hope’s mission is to raise funds to research a cure for a very-rare – and always fatal – childhood disease called Duchenne muscular dystrophy,” Raffone says. “But COVID changed everything, because we couldn’t hold fund-raising events. This time the board approved.”
Duchenne muscular dystrophy occurs only once in 3,500 live births. Its young victims (mostly boys) lose the ability to walk by 12-13. They’re on ventilators by the mid-teens. And they die in the low-20’s from asphyxiation.
Jim Raffone’s son James Anthony (“Jamesy”) has Duchenne’s. And, just past his 13th birthday, he can no longer walk. So Raffone and three JAR of Hope teammates left for Nepal on April 25, and recently returned in triumph.
“We couldn’t even see Everest the first day, because of the fog and the other peaks,” Raffone says. “But when the fog cleared…it took our breath away. We didn’t need supplemental oxygen tanks at first, but a couple days in, when we hit 14,500’, we needed it.”
At 15,000 feet, Raffone notes, “everything got hairy.” The terrain was much steeper, the switchbacks much sharper, and the air much thinner. And the trail much narrower, filled with 400-pound yaks carrying other climbers’ gear. Breathing became difficult, and they needed supplemental oxygen.
“When we reached the highest base camp,” Raffone says, “we were told we couldn’t stay more than 45 minutes because of the oxygen deprivation. After we did pushups up there for kids with Duchenne md, my pulse-oxygen dropped to 64% (usual levels are 98-100%). But I believe we set the Guinness World Record for pushups at the highest altitude.”
By the last part of the trip, in temperatures as low as -5 degrees, the team didn’t feel well enough to eat or sleep. It was so cold they actually put boiled water in their sleeping bags. For the last three days, Raffone was able to eat only one piece of bread with peanut butter each day.
“It will take me a while to process the whole experience, “Jim Raffone says. “But I’m already so thankful we were fortunate enough for researching Duchenne, and that we touched some hearts with our efforts. And we are certainly touched by their generosity.”
In addition to achieving their goal of reaching the highest base camp on Mount Everest – 18,372’ – they also raised $180,000 toward the $750,000 needed to start a clinical study of Duchenne at the University of Florida.