By Jonas Denis
Published on 12 Mar 21 @ 7:43 pm
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“I stopped working to be with my son”, announces Christel Andreu, 41 years old and mother of Leo-Paul, 14 years old, with leukodystrophy.
It’s a genetic disease very rare which destroys the nervous system of children or adults. The lifespan is often reduced when it occurs.
“People are generous”
At the moment, Christel Andreu brings together Lego for create a ramp to the house when his son will no longer be able to travel.
“People are generous, I have already received a lot of Lego for my construction,” she says, pulling out the half-built ramp and placing it on the table.
Christel lives alone with her son in her parents’ house. Léo-Paul is not present this Friday morning, “he is in a specialized institute for handicapped children”.
She sold her restaurant to take care of her son
Christel Andreu sits down, takes a sip of her coffee and explains: “When I receive Lego, I sort them and I keep the best suited. Yesterday (editor’s note: Thursday March 11), I received a large donation of Lego, I spent my evening sorting them out, ”she laughs.
The wheelchair ramp will collect approximately 5,000 pieces before it is completed. She emphasizes: “I’m the one going to look for the Lego, I don’t want to disturb people. “
Member and administrator of the ELA association (European association against leukodystrophies), she sold her restaurant when she learned of her son’s illness.
Discovery of the disease at 10 years
A dynamic student and volunteer in class, he was one of the best in his class and was good at sports: “He was enrolled in a tennis club in a club doing well, everything was fine,” she concludes.
But around the age of 10, he started to regress: “Léo-Paul continued to participate but was less good in class, he had more and more difficulty reading and expressing himself”. It marks a pause: “With my ex-husband, we were in the misunderstanding. “
By looking for the origin of the problem, parents face more questions, even accusations: “Some doctors told us that the child was not stimulated enough and that it was our fault. “
Finally, a speech therapist asks the parents to make an X-ray: “The next day, the neurologist calls us back and reports an anomaly. She stops: a form of leukodystrophy was detected.
“Léo-Paul is a fighter”
“When Léo-Paul has an epileptic seizure, we wait for him to wake up and it’s a surprise,” she continues, “I don’t know how I’m going to find him. “
Christel Andreu lives in fear, her son’s state of health can deteriorate at any time. “He is aware that he is sick, but not of his rapid lethality,” she said.
His son is a fighter, he wants to live and shows it every time: “Léo-Paul plays football with his father on Wednesdays and with me, he likes to go for a walk with his scooter at full speed. “
In the musical background, the star pieces of the 80s continue to pass symbolizing a joie de vivre that she will never leave.
It is out of the question to treat him as a handicapped person. “After all, he’s a child like any other,” she continues. When he feels sorry for himself, I tell him: “You will not win against the disease but by being happy, you will live better with it”. “
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