Duchenne muscular dystrophy is a rare muscle wasting disease. Duchenne is 100 percent fatal. Because the disease is so rare, funding to find a cure is practically non existent. The doctors told this family there’s nothing that can be done. This father doesn’t agree, and now he’s running for his son’s life.
Jim Wears his Heart on His Sleeve, and His Son on His Shoulders.
After suffering a heart attack during Jim’s second attempt at completing the 273 KM ultra race at the Grand to Grand Ultra in September 2017, Jim was determined to complete the race. The following year, Jim headed back to G2G where he finally accomplished his three year goal. After seven brutal stages Jim crossed the finish line with his son, Jamesy, on his shoulders.
In 2013, Jamesy, was diagnosed with Duchenne muscular dystrophy. When the Raffone family learned of Jamsey’s 100% fatal disease, the doctors told them that there isn’t anything that can be done to help them.
That was either the right thing, or the wrong thing to say to the Raffone family. Instead of listening to what the doctors told them, the Raffone family has been doing everything in their power to raise awareness about this deadly disease, and ultimately help to find a cure.
Alps 2 Ocean Ultra, New Zealand.
The ultra community is a niche community. It’s also an international community. Michael Sandri, the founder of the Alps 2 Ocean Ultra in New Zealand had met Jim while participating in the Grand to Grand Ultra in 2016. Sandri was constantly being asked by other participants, “Why isn’t there an ultra in New Zealand”. He couldn’t think of a good reason why New Zealand doesn’t host an ultra race. With the help of family and friends, he created a race.
Sandri invited Jim to participate in the race’s second annual run. This was an opportunity to spread the word about Duchenne around the other side of the planet. The opportunity was far too great for Jim to refuse. Even if it meant not having enough time to sufficiently train for the epic 323 KM race.
The Alps 2 Ocean Ultra begins at the base of Mount Cook. The course skirts along alpine lakes and ascends up countless mountain ridges and foothills. Eventually descending into the low laying valleys, the course finishes along the shores of the Pacific Ocean.
Team JAR of Hope.
Fellow teammate Bill McCarthy, another Grand to Grand participant. Bill had fundraised in support of JAR of Hope. Supporting them in their mission to find a cure for Duchenne.
Every person who talks to me or asks me about ultra running, I always tell them about JAR of Hope and Duchenne muscular dystrophy.Bill McCarthy
McCarthy had heard about Duchenne for the first time when he saw Jim running at the Grand to Grand Ultra in 2017. Bill was shocked to learn about Duchenne and he thinks about the Raffone family every single day.
What makes Duchenne so unique, is the lack of support and funding from governments and pharmaceutical companies because it’s such a rare disease.Bill McCarthy
Jim encourages his teammates to “run their own race”. Fundraising and supporting JAR of Hope before the race, is all about Duchenne muscular dystrophy. The race though, Once the gun goes off, that’s all for them.
27 Hours of Suffering.
The elite runners at the front of the pack were finishing the long stage at just over 10 hours. 88 KM and a ton of climbing, Jim estimated it would take him nearly 30 hours to complete. This race isn’t about competing for Jim though. It’s about a platform. It’s an opportunity to continue raising awareness about Duchenne.
It’s not about being a “competitor”. At that point it’s all about the admiration for this fellow human being and what they’re willing to put themselves through. Then they want to know why, why would someone spend almost 30 hours out there on a course? Then I’m able to tell them about my son’s story.Jim Raffone
After running through the night and making one last epic push over a nearby mountain, darkness eventually turned into dawn. Michael Sandri stayed awake through the entire night to ensure he could greet every last participant coming in from the long stage. Sandri greeted Jim with a hug as Jim finally came into camp from his 27 hour day.
Sandri relayed a message from Jim’s family, “One checkpoint at a time captain”.
There would still be many checkpoints to go after the long stage. However, surviving the long stage was a huge victory. The hardest part was over. Theoretically anyways.
It’s Not Over Until it’s Over.
After spending nearly 30 hours out on course, you’d think the worst was over. The next day was even tougher. There was almost just as much climbing, but in much shorter distance. The climbs were steep and brutal. The time cut-offs were also considerably more strict, so the runners had to be quick.
This race would be tough for Jim, all the way until the end. The end did finally come though. 7 days, 323 kilometres later, Jim had finally ran over the finish line in the small coastal town of Oumaru. The crowd of spectators, participants’ families, and locals, all cheered on Jim as he crossed the finish line. Jim running with his JAR of Hope flag in the air.
It took everything he had to cross that finish line. Yet, he somehow mustered up the energy to steal the crowds attention for just a little longer. Standing underneath the finish line banner, Jim shared his son’s story.
The story isn’t over yet. Jim is on a mission to grow his JAR of Hope team, to bring them back to the races he has already ran. Jim hopes to take JAR of Hope and his son’s story to Ultra races on all 7 continents.
To learn more about Duchenne muscular dystrophy and JAR of Hope, visit https://jarofhope.org/
Photos by Ryan Richardson.