The only one to suffer from this disease in France, he launches a major march for all disabilities in Sarthe

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Damien Loison created The Sparks 72 last March. He launches a inclusive walking for the disabled open to all, Saturday November 30, 2024 in Le Mans (Sarthe).

Only patient with Martnup syndrome in France

In his apartment on Avenue Bollée in Le Mans, Damien Loison and Pierre Giclat are refining the organization, via the young association Les Etincelles 72, of one of the very first marches for the disabled scheduled for Saturday, November 30 in Le Mans. The objective? Raise awareness around disability, all disabilities.

Damien Loison suffers from very rare genetic diseaseMartnup syndrome. “I am the only case in France,” he explains.

His body does not assimilate what it absorbs. It was detected when he was just three years old, after an attack of chickenpox.

I spent my first ten years alternating between home and hospital: Necker, Montpellier, Lyon, Bordeaux…

Her two sisters also have a genetic disorder. “A fourth died at the age of two,” he whispers.

First an invisible handicap

“As I am the only one suffering from it, there is no medical research. We deal with treating eczema and neuropathy.”

Damien Loison was able to work for around fifteen years in Paris, as a computer scientist.

Before 2018, it was more of an invisible handicap, I was tired but I could work

He was thus able to create his IT assistance company in 2014. Four years later, events continued. “I lost contracts and symptoms of my illness started.” They greatly limit his mobility. “Now I am very limited. When we lose a part of our body, it’s a mourning that we have to grieve,” he believes.

“Everyone preaches for their parish”

On the advice of a friend, he came to settle in Le Mans. “I first lived in Les Sablons in an apartment on the 3rd floor without an elevator. » Very complicated.

“I was finally able to obtain a PRM (person with reduced mobility) apartment.” He walks today with crutches and a brace. “My brain no longer controls my legs.”

Damien sought to join an association. He ran into a problem. “There are many associations around disability but everyone preaches for their parish,” he believes.

Les Etincelles 72: a multi-disability association

He decided to open a multi-disability association. With a few people, he created Les Etincelles 72, in March 2023 with a dual objective “to mix disabilities and for each person to get to know and understand the problems of the other disability”.

Among the supporters of the first days: Pierre Giclat, today treasurer. “We met at Maine SEL, a local exchange system.” Pierre is not disabled. “We hit it off, he took me on the adventure. Today, we are two pillars: he is the hyperactive one, I am the trailing reindeer, who makes the sleigh reach the bottom. To slow him down is my role sometimes,” he smiles.

A first disability walk

Around thirty people joined the association. “We get to know each other and we do things together,” continues Damien Loison. They are looking for premises but are having difficulty finding it.

For the first time, they are organizing an inclusive march for disabilities, all disabilities, on Saturday November 30. An appointment is open to anyone who wishes from 1:30 p.m., Place du Jet d’Eau. “Around fifteen associations have already joined us. We are all young but we manage to unite! »

PracticalInclusive walking for the disabled Saturday November 30. From 1:30 p.m., Place du Jet d’Eau. Contact: 06.32.53.29.10

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