Mathilde Fabre spent her childhood in Perpignan (Pyrénées-Orientales) in a wheelchair. Today, thanks to research funded by the Telethon, this young mother, who gave birth to twins last year, no longer needs them. “Few people experience things in this order, she confides in 20 Minutes. Most of the time, we are standing, then we switch to a wheelchair. “
When she was little, it was a genetic disease that prevented her from walking for long. “I got tired very, very quickly,” confides this engineer, who now works in the Paris region. I could only walk ten or even twenty meters, then I had to stop. From the age of 13, I used a wheelchair. As soon as I got out, it was in a wheelchair. “It was only at home, surrounded by her family, that she was able to move around by walking,” with difficulty, “confides Mathilde Fabre. I had really reduced autonomy, a very limited walking distance. “
“It was a very, very strong moment”
Becoming a young adult, bored, Mathilde Fabre ended up abandoning the exams, which they had taken every year from a very young age to follow the evolution of her disease. “Every time I went for a consultation, it didn’t progress,” she says. But, in 2016, at the age of 26, eager to be a mother, she ended up consulting specialists again. She took it well: thanks to scientific progress, which Telethon donations made possible, she was able to put a name on her illness, the congenital myasthenic syndrome. “It was a very, very strong moment, I had waited for this all my life. For me, it was just one more review. Only there, in the space of a few years, the techniques had developed considerably, ”remembers the 30-something.
Mathilde Fabre learned that the anomaly which prevented her from walking for a long time was “at the level of the junction between the nerve and the muscle”. And above all, that a treatment existed. “Very quickly”, the young woman made considerable progress. “After a fortnight, I saw that I was able to stand up longer, that I was able to walk longer. And it was confirmed, little by little. After a month, I was able to walk for a quarter of an hour. Whereas before, it was not even a minute. It was crazy. “
About a year and a half after the start of her treatment, “I told myself that I really didn’t need my chair anymore,” says Mathilde Fabre. Ever since I was little, I had been getting used to the idea that I was going to spend my life in a chair, and in the end, it wasn’t that bad. I was fulfilled, autonomous as much as possible. But I never imagined that one day I would no longer need my chair… ”She took the opportunity“ to travel. A year after the treatment, we went to Peru with my boyfriend and his brother. “It was” an incredible period of discovery and freedom, “recalls the young woman, who has since become a fervent ambassador for the Telethon.