Mathilde Faber spent her childhood in Perpignan (Pyrenees orientalis) in a wheelchair. Today, thanks to research funded by Telethon, this young mother, who gave birth to twins last year, no longer needs them. Few people experience things in this order, as you would trust 20 minutes. Most of the time we stand up and then move into a wheelchair. “
When she was young, it was a genetic disease that prevented her from walking for a long time. “I got tired very quickly,” says this engineer, who now works in the Paris area. I could only walk ten or even twenty meters, and then I had to stop. Since I was 13, I’ve used a wheelchair. As soon as I got out, he was in a wheelchair. “She was only at home, surrounded by her family, that she was able to move by walking” with difficulty, says Mathilde Faber. It really reduced the autonomy, very short walking distance. “
“It was a very, very powerful moment.”
Becoming young, bored, Mathilde Faber ended up giving up the tests, which they had been taking every year since they were young, to follow the progression of her disease. “Every time I went for a consultation, there was no progress,” she says. But in 2016, when she was 26, eager to be a mother, she ended up consulting professionals again. She coped with the matter well: thanks to scientific progress, made possible by donations from Telethon, she was able to make a name for her disease, congenital myasthenic syndrome. “It was a very powerful moment, I’ve been waiting for this all my life. For me, it was just one more revision. There is only one, in the span of a few years, that the technologies have evolved so dramatically,” recalls The Thirty Thing.
Mathilde Faber learned that the anomaly that prevented her from walking for so long was “at the level of the junction between nerve and muscle.” Above all, this remedy was there. “Very quickly,” the young woman made great progress. “After two weeks, I saw that I was able to stand longer, that I was able to walk longer. And that was confirmed little by little. A month later I was able to walk for a quarter of an hour. Whereas before, it wasn’t even a minute. It was crazy.”
About a year and a half after starting her treatment, “I told myself I really didn’t need my seat anymore,” says Mathilde Faber. Since I was young, I was used to the idea that I would spend my life in a chair, and in the end, it wasn’t that bad. I was satisfied and independent as possible. But I never imagined that one day I wouldn’t need my seat… “I took the chance” to travel. After a year of treatment, we went to Peru with my friend and his brother. “It was a ‘wonderful period of discovery and freedom,'” recalls the young woman, who has since become an enthusiastic ambassador for Telethon.
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