Moselle. Fight against leukodystrophies: meeting with little Oscar-James

With a gesture, Oscar-James sends his bus rolling into a table in the Padfive bar . Léa, one of his mothers, catches the miniature before it falls into the void. The game seems childish. It isn't for the almost 3-year-old boy, who suffers from a form of leukodystrophy.

Last weekend, the family was in Lexy to participate in an event in support of Ela, of which Léa and Rachel, Oscar-James's other mother, are members. It was an opportunity to share their journey with the organizers, Dylan Di Lorenzo and Geoffrey Bonsignore.

Léa goes back a year and a half. "At 13 months, Oscar-James was walking and starting to talk. At 15 months, he lost the use of his left arm. A week later, he was limping in his left leg and couldn't speak." In November 2023, the boy was admitted to Necker Hospital in Paris. "He had everything he needed: blood tests, lumbar puncture, MRI, CT scan, electroencephalogram...", Rachel lists.

The results came in on July 26, 2024: the child suffered from Aicardi-Goutières syndrome. "A very, very rare disease." Only 200 cases have been reported in Europe and North America. "It's as if he had chronic meningitis damaging his brain," Léa describes. "The myelin sheath is damaged. The muscles are in a normal state, but the nerve signals aren't strong enough to activate them."

Now, Oscar-James's daily routine is filled with rehabilitation: speech therapist, occupational therapist, psychomotor therapist, etc. "The idea is to constantly stimulate his muscles. For him, it's an effort to be able to stand up straight. He's like someone who's had a road accident and has to concentrate to perform everyday movements again," Rachel says. "When I picked him up after his hospitalization, he was like a rag doll. He couldn't sit up on his own," Léa recalls.

Since then, the lives of both parents have been punctuated by "moments of solitude. Doctors dodge the very direct questions we might ask them, like about life expectancy," Rachel confides. "What will he be like at 8? Will he ever be 20 or 30? Even to prepare us for what comes next, no one gives us any guidance..."

Amid this uncertainty, the European Association Against Leukodystrophies became the couple's lifeline. To obtain help, they managed to get in touch with the Departmental House for Disabled People (MDPH) or connect with others who were experiencing Aicardi-Goutières syndrome.

Similarly, Ela seemed like an obvious choice to Geoffrey and Dylan, managers of Padfive, when they set up their charity. “About fifteen years ago, I started donating to the association after a TV show that really moved me. I had to stop when I found myself unemployed,” says Geoffrey. “It was an opportunity to get something going again…”

In total, 130 players participated in 24 hours of paddle tennis, raising €1,900 in donations. The check was received by Ela ambassadors Léa, Rachel, and their Oscar-James. It was a way to break from their "moments of solitude" for a few hours.