Jérôme Deshayes and his three sons, a marathon for life
It’s such a touching image that it almost brings tears to your eyes just looking at it. At 70 years old, Jérôme Deshayes, who suffers from Charcot’s disease, is surrounded by his three sons and is about to cross the finish line of the Rouen marathon. They all support each other, as the emotion is so strong at the end of the race.a
Jérôme Deshayes is 70 years old when he crosses the finish line.The father of three grown sons, he has been suffering from Charcot’s disease for three years. This neurodegenerative condition causes progressive muscle wasting. Although already severely limited in the use of his arms, the 60-year-old has never given up. It was his son Arthur, a journalist at France 3 Normandie and a runner in his spare time, who challenged him and his two brothers to take part in the Rouen marathon relay. This adventure is only just beginning, as the quartet intends to go even further in raising awareness of the disease. Let’s go back to Sunday, September 28, 2025, a date forever etched in their calendars, when they crossed the finish line together.
| The birth of a family challenge
Nothing seems impossible for Jérôme Deshayes. This native of Arzon, who faces his illness with a certain lightheartedness and a touch of humor, is clearly not one to give up at the first hurdle. On April 9, 2025, when his son Arthur suggested he join in on a slightly crazy project to run a marathon relay, walking the last 12 kilometers together, he didn’t hesitate for a second. After getting the doctor’s approval, he began training with a steely determination.
“From the moment he was told he would have to walk 12 kilometers, he walked all the time. He did lots of fast 5-6 kilometer walks, almost every two or three days, from June to September,” says the youngest son of the family, Arthur. And so it was that he, like his three sons, found himself facing a unique challenge: completing a relay marathon, with the pressure of the time limit. “When we made our estimates, taking the upper range for everyone, including my father, we came up with a race time of 5 hours and 45 minutes. We risked crossing the finish line when it might already have been dismantled. Without the atmosphere, it would have been catastrophic. We had to hurry,” recalls Arthur.
Before setting out, Jérôme consults his neurologist. The doctor approves the project, but warns against overworking the body, which could prove dangerous. For their part, the four men prepare themselves, each in their own way, physically and mentally, to be ready on the big day and tackle the 10 kilometers they must run in turns. For some, the challenge is daunting. When running has never been part of your daily routine, completing a 10-kilometer race, regardless of your time, is no small feat. Arthur, the first relay runner and the only regular runner in the quartet, has been training two to three times a week since January 2025. However, due to a leg injury, he chooses to remain cautious during his portion of the race. “I’ve learned to enjoy running and to improve. I could have continued more intensely after the race if I hadn’t been injured,” he says.
Pascal, the eldest, described by Arthur as “the dark-haired one, the strongest,” is more into team sports than running. “But like the three of us,” says Arthur. “We need a ball to play with our friends. We don’t like running alone.” Nevertheless, the family challenge pushes them to excel. Tristan, who is in good physical shape thanks to his job in construction, also rose to the challenge brilliantly, completing his 10 kilometers in 48 minutes. “It was his first race. And since then, he’s been running more, even doing interval training,” Arthur explains, before sharing an anecdote about his brother’s relay. ” At the start of his 10 kilometers, he didn’t know what pace to run at. He came across a marathon runner and asked if he could follow him. They talked, and he explained that he was running for our father and his illness. The guy replied, ‘Don’t let go of me, I’ll take you all the way.’ That’s how he did it in 48 minutes. “
As for their dad, he impressed everyone by far exceeding the predicted time. “We thought it would take us 2.5 hours. Our friends and family went to a restaurant with that time in mind. But we were going much faster than expected. They didn’t even have time to finish their meal,” smiles Arthur. “We were running at a pace of 12 km in 2 hours. We had trouble keeping up. We had already run 10 kilometers, and my brothers were limping at the end… He was the one who kept us going.” Even though they all completed their portions despite the difficulty, Arthur is keen to point out that there was no real preparation behind it. We spent a week’s vacation together without running once,“ he says. To see the effort through to the end, the quartet was mainly carried by the strength of the group: the four of them, who have always been ”close-knit,” and the forty or so of their loved ones who rallied the crowd to support them.
« We had already run 10 kilometers, my brothers were limping at the end… He was the one who took us there. »
Arthur Deshayes
| €25,000 raised and already focused on new projects
Initially, the project was simply about “doing something together.” But very quickly, the idea of running for ARSLA, an association that supports people affected by Charcot’s disease, was born. “He had already been in charge of volunteers for a large charity regatta in May 2025 in the Gulf of Morbihan to raise funds. It was the first time he had really committed himself to the cause of his disease. And since it had kept him very busy and done him a lot of good, I thought we should find a project for him,” recalls Arthur, who initiated the project. The initial goal was to wear the ARSLA association’s T-shirt during the race, but they quickly set up an online fundraiser, which was a huge success, raising €25,000, a record amount to fund research and help patients. “He had hardly ever seen anything like it. Donations of more than $20,000 usually only happen at concerts or big events,” confirms Arthur.
This sum was a huge surprise. The crowd cheering them on, the announcer honoring them on stage… Everything was unexpected, even “unlikely,” sums up Arthur, right down to the documentary for France 3 Normandie, initially planned as a simple news report but ultimately turned into a 26-minute documentary, broadcast on Thursday, February 26. This first family experience seems to have clearly opened up new horizons.
The story continues for the Deshayes family, who plan to release the first episode of a podcast series entitled “Santé Papa!” (Cheers, Dad!) following the broadcast of the documentary (on February 26) to raise awareness, “talk to patients so they don’t feel alone,” and continue to share rich and meaningful moments together.
➜ Watch the documentary « Marche ou rêve » on France 3 Normandie
Sabine LOEB
Journaliste
