Telethon: the fight of 7-year-old Valentin and his family against Duchenne muscular dystrophy

“What is lost is lost”

The first three years of Valentin's life had, however, been “normal”. Certainly, “he walked late and used his hands to get up,” indicates his parents who live in Saint-Aulais-la-Chapelle in the South Charente. Certainly, “he had a little delay in motor skills”. Nothing to worry about. Until the start of 2021 and major bouts of fever. “The doctors thought it was a hip cold.” The tests proved that it wasn't that. Back home. Two days later, the fever returned. And shows a very high level of an enzyme: CPK. “A hundred times above average,” says Guillaume Deletage. Valentin was then diagnosed with myositis, an inflammation of the muscles. Three weeks later, the enzymes exploded again and an appointment was made at Pellegrin in Bordeaux where a biopsy was performed. In September the ax falls. Duchenne muscular dystrophy. “There, the world is collapsing,” whispers Guillaume Deletage. “We try to understand the illness, know what we can do and how to help him live his life. » The pediatric neurologist does not hide the fact that Valentin will lose his ability to walk. “And what is lost is lost,” summarizes the parents who for their part were followed by a psychologist. Going back is almost impossible. Motor skills have already deteriorated. “A year ago, he walked up the stairs standing. Now it's on all fours. »

The doctor lets the parents see a little bit of clearing up. Thanks to research which is progressing (see below) and which in ten years has offered more than ten years of life expectancy to patients. She is now 34 years old. The pathology actually attacks the respiratory system.

“If he wants to do tree climbing he will do tree climbing.”

To try to slow the progress of this disease, Valentin takes cortisone. Attended CE1 at the Saint-Aulais-la-Chapelle school, he is followed by a psychomotor therapist and an occupational therapist. “We want him to have a normal education. » He also goes to the physiotherapist in Barbezieux. A Sessad educator “comes to the house to calm her emotions,” adds Émilie. Cortisone can tend to irritate him. Despite all the obstacles, “we make sure that he lives his life,” insists Guillaume. “If he wants to tree-climb, he’ll tree-climb. » Valentin made his dream come true by accompanying the players of the French football team on the pitch during a match in Bordeaux. Proud as a pope, he also climbed into a fire brigade basket, had his first flight… Every summer he doesn't miss a beat of the Tour de France. Under the caring eye of his sister Lisa. “She overprotects him,” observe Guillaume and Émilie, who are forced to navigate the twists and turns of administration. “We have to fight for everything,” they summarize.