Benjamin Murgis, a former police officer, is the father of Antoine, 12 years old, who suffers from Duchenne muscular dystrophy. Today in a wheelchair, his son is the driving force behind his commitment to the 2024 Telethon. A sporting challenge, a quest for hope and immeasurable love, these are the driving forces of this father who is ready for anything.
In the press room that morning, as part of a conference relating to the 2024 edition of the Telethon,Benjamin Murgis' testimony shocked the audience. A former police officer, this father saw his world turned upside down in 2017, when his little boy Antoine, then aged 5, was diagnosed with Duchenne muscular dystrophy, a genetic disease which gradually destroys muscles. “Everything was fine before that,” he recalls, his eyes moist and his voice trembling. “Antoine walked, ran. And then everything changed.”
Now aged 12, Antoine is in a wheelchair. But contrary to what one might imagine, he is not a dejected child. “He is happy, he keeps smiling,” says Benjamin. But it is a reality that weighs heavily, because the disease is there, omnipresent.
“They supported us every step of the way”
The father had to retire early to be able to care for his son. Behind this daily “sacrifice” lies another fight: that of hope. A hope nourished by the AFM Téléthon, which supports research, but also by another association particularly dear to its heart, “Les Képis Pescalune”. Founded in the early 2000s, this association provides help to sick children and orphans of police officers. “They only have one idea in mind: to make children dream,” says Benjamin with palpable emotion in his voice. “They supported us every step of the way.”
But Benjamin is not content to receive. He wants to act, to give hope to others. “If everyone participated, if all the villages collected donations, the Telethon would be even stronger,” he says. “Perhaps one day, Antoine could have access to this treatment which would stop the disease.”
Pascale Loison, coordinator of the AFM Gard Sud, has witnessed Antoine's development for several years. “I have known Benjamin and Antoine for some time. I intervened at Antoine’s school to raise awareness among his classmates about the disease,” she explains. “Antoine is a big boy now, but the illness remains. We all hope that one day, research will find a treatment to stop this disease.”
“An hour for a life”
Currently, a gene therapy treatment has been developed, but it comes too late for Antoine, whose disease is already too advanced. “I am thinking of another little boy, Sacha, who, at 6 years old, benefited from this treatment,” explains Pascale with emotion. “Sacha was at the stage where Antoine was at that age, he could no longer climb the stairs, he was on the verge of moving to a wheelchair. Today, after this treatment, he jumps hopscotch and climbs the stairs.” Benjamin pauses. And he adds: “It’s an injection, an infusion, it takes an hour. An hour for a life. A second birth…”
A sporting challenge: raising awareness and supporting the cause
This year, for the 2024 Telethon, Benjamin decided to take on an immense physical challenge to attract attention, raise awareness and support the cause. With the Les Képis Pescalune association, he will connect Montluçon, the town where Antoine was born, to Aimargues, in four days by bike. On his arrival, he will pass the baton to Vincent Noyer, who will attempt an extraordinary sporting feat: 5,000 push-ups, 5,000 sit-ups, 5,000 jumping jacks, 80 kilometers of running, 300 kilometers of cycling and 96 tons of bench presses. lying down, all in 48 hours.
“It’s for Antoine, it’s for all the children”
“It’s for Antoine, it’s for all children,” Benjamin concludes, with a determined look on his face. For now the fight continues, carried by a father whose love and determination, have no doubt, have no limits.
