Victoire, 3 years old, suffers from spinal muscular atrophy

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Telethon 2023: Victoire, 3 years old, suffers from spinal muscular atrophy

Telethon 2023: Victoire, 3 years old, suffers from spinal muscular atrophy – (franceinfo)

The Telethon is back for its 37th edition, starting Friday, December 8. On this occasion, the France Télévisions teams went to meet Victoire, 3 years old, who suffers from spinal muscular atrophy and was able to benefit from gene therapy.

Victoire, 3 years old, lives in Lassy (Ille-et-Vilaine). When she started life, everything was going well. However, when she was 18 months old, the pediatrician detected a lack of reflexes. After a few tests, the diagnosis came: spinal muscular atrophy, a rare genetic disease. It causes premature muscle wasting. “For Victoire, it mainly manifests itself in the legs. (…) Anything that involves locomotion will handicap her”explains the young girl’s mother.

One in 6,000 newborns affected

The disease affects one in 6,000 newborns. In the most serious forms, it can be fatal. In her misfortune, Victoire had a little bit of luck. One month after her diagnosis at Necker hospital (Paris), she benefited from gene therapy. Over the weeks and months, his parents observed progress. If she has been able to make progress, it is thanks to advances in research and therefore to the Telethon. The 37th edition of the event starts Friday December 8.


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