2023-10-07 05:35:01
The 2023 edition of the Telethon will be held from December 8 to 9, 2023. Among this year’s ambassadors, a Niçois, Léon 9 years old, will be present on the show’s set. The boy suffers from a rare neurodegenerative disease and is relying on research to find a treatment.
“I’m a garden gnome, even though I eat a lot… A lot!“Léon, 9 years old, is out of his depth. This boy from Nice is one of the new ambassadors for the 2023 edition of the Telethon. An opportunity to make his illness known, a giant axon neuropathy, to thousands of viewers.
“My feet are twisted, I can’t run or walk for long periods of time, and I have difficulty writing” explains the young boy.
This rare neurodegenerative disease deprives patients of their movements before reaching the nervous system; the life expectancy of patients does not exceed 30 years.
“These are illnesses that go very quickly, we don’t talk regarding them too much because it’s difficult“, explains Émilie, Léon’s mother.
Despite several operations and the application of casts, the boy’s health deteriorated over time.
Léon Bernardini, 9 years old, in CM2 class is one of the faces of the 2023 edition of the solidarity campaign. • © Telethon
But to succeed in putting a name to Léon’s pathology, the family took a path strewn with pitfalls. The first alerts are given when the boy is in kindergarten. He falls often and struggles to carry heavy loads. The child’s parents scoured health professionals across France, without success.
In 2021, the Timone hospital in Marseille finally announced the pathology to them. It was Léon’s frizzy-looking hair, a symptom of the disease, that tipped the head of the department off.
The family remains hopeful of a treatment thanks to a researcher from the Lyon NeuroMyoGène laboratory.
The latter is currently working on giant axon neuropathy, with encouraging results.
For now, there are researchers trying it on animals. I saw the laboratory, soon in one or two years, they will try on other people who have the same disease on me,
The young boy is accompanied by a School Life Assistant at school, to help him follow his lessons on a daily basis. • © Pierre Olivier Casabianca FTV
To advance research, the laboratory supported by the Telethon needs funding and the generosity of individuals, which is why Léon’s family accepted that he be an ambassador. “The hope is that the researcher will carry out gene therapy and that we will be able to modify Léon’s faulty gene. She is also working on a drug that might alleviate certain effects of the disease.“, explains Émilie.
The boy will be present with his mother on the stage of the television show on December 8 and 9 to talk regarding his illness and hope to make advance research through generosity donors.
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