Jeremy Zeitoun, 25 years old. This Parisian loves sports, traveling, drinking and going to the movies. He has a busy social life. But this does not go unnoticed. Suffering from Friedreich’s ataxia, a neurodegenerative disease that causes disconnection of the nervous system and muscles and progressive disarticulation of the limbs, he is forced to move around in a wheelchair. Do not count on the fact that he will mope, will be a spectator of his own life.
He chose to be an actor. On Sunday, March 13, he will be at the start of La Grande du Grand Paris Express. He participates in the 10 km race (departure at 8:45 from Republic Square). But he doesn’t run like the others, Jeremy. He is installed in Jolette and his relatives are pulling him. Two in the front, one in the back for balance. “There are always at least six of them to ensure the relay. Because Jeremy is a beautiful baby with a height of 1.80 m by 80 kg! “, laughs his mother, Lali.
A well-oiled mechanism that allows the son to spend time with friends, experience sports emotions. “I can’t wait, it’s the meeting of the month! Joelette and I didn’t train much during the winter, so I can’t wait to meet my friends.” he said. And the mother adds: “Besides, March 13th is his birthday, so we are going to celebrate after the race! »
“He ended up in a wheelchair due to a serious illness at the age of 14”
During half an hour spent by the phone, Lali translates. Because Jeremy has speech problems associated with the disease. “On the phone, it’s terrible. But once we know it, everything goes well.” she said. Thus, it is Lali who traces Jeremy’s journey. “He always liked sports, he did a lot of boxing. He ended up in a wheelchair due to a serious illness at the age of 14, it became too difficult to walk. To keep his abs and back in good shape, he wanted to do strength training with his trainer, Nicolas Piedmont. It’s more fun than exercising and it allowed him to stay with friends at the gym in our area. (10as well as county). » He then had to put the gloves aside as the limb coordination became too difficult.
Lali Zeitoun continues: “Being in a wheelchair was a big morale blow for the whole family, but especially for him. This is unbearable, this is a complete injustice. We wanted to prove to him that, despite the wheelchair, he can continue to live a good life, do things like everyone else. We are fortunate to have the means to offer our children beautiful trips to help them discover the world. »
Cuba, Jamaica, Tunisia, Vietnam… Jeremy has a lot to tell. As well as any acting. He also has a job, like many others. For three years he managed HR projects at Grant Thornton (audit, consulting and accounting) in Neuilly-sur-Seine. He is supported by a life assistant. His father Frederik also works there.
Jeremy lives in an apartment building, he has a job.
Jeremy also has a different home than his parents and his younger sister Lucy. In an inclusive share, at 19as well as district. “We created the Fraterniteam association to promote inclusive roommates, details his mother. Therefore, he lives with four brilliant young people – two girls and two guys – who help him daily. » The goal of the association, which has a sports and cultural section on its website, is to offer activities for people with disabilities. Two or three years ago, Lali left her job as a kindergarten teacher to devote herself to the association. “I am no longer a helper, these are young people who do everything every day. But I definitely make it easier for them by organizing races. The association is very small, so if we want it to live, we must create projects! »
Jeremy Zeitoun suffers from a neurodegenerative disease. Not only did this almost 26-year-old Parisian not mourn his fate, he lived his passion for the sport to the fullest. © Brotherhood
The Grand Paris Express on Sunday 13 March is not the only project. In November 2021, Jeremy and his gang were spotted at the Race of Lights in Paris, an event in favor of cancer research. And last February they were on the Sablier trail, in Yvelines. “There were ups and downs, it was very physical, says Jeremy. There were ropes to pull Jolette! »
“My son is a war machine”
Also, racing in joëlette was far from obvious. Lali and her son did not know about his existence. They were actually friends of Jeremy who had seen the guys running with Jolette during the Barcelona marathon three years ago. So when they returned they said to him: “The next time we run a marathon, he will be with you! “My son is a fighting machine, continues Lali Zeytun. So if you tell him we’re going to do something, we’ll actually do it! He studied at business school, he managed to contact France Télévisions, who offered us Jolette during our imprisonment. » A beautiful gift that allowed Jeremy to experience new adventures. To also have fun, as during a bullfight, in winter, in the costume of Santa Claus.
However, he has yet to take part in the marathon. It could have been done during the 2020 Paris Marathon, but Covid got through it. “It’s a shame that it was postponed because our riders were well prepared, we were on the rise. Then it stopped, someone returned to their families, someone to the province, it turned our plans upside down. » The new team does not feel able to swallow 42.195 km, priority is given to shorter distances. “But the idea of a marathon has not sunk into oblivion, Lali warns. We are waiting for the right moment. »
Jeremy Zeitoun, whatever happens, will be ready to warm up his vocal cords. His mother tells a joke: “When he’s in jolette, he usually yells at guys to cheer them up. (laughs). » So it will be on Sunday, March 13th. Moreover, his friends have a competitive spirit and can flirt with 50 minutes for 10 kilometers. “They are my heroes, run lali. I admire them, they strive for athletic performance, while they have an 80 kg leg in jolette. (laughs). »