It's Telethon weekend: 30 hours of live TV to raise funds and advance research into rare diseases. In Juvigné, a mother and her two children live with a rare form of Charcot disease. For this family, the Telethon is hope.
The telethon begins this Friday, for a 30-hour television marathon. This popular charity event is organized to benefit medical and scientific advances aimed at fighting rare diseases. Objective: to exceed the 93 million euros collected in 2023. For Elisabeth Lepéculier, this fight is essential. This resident of Juvigné is the mother of two children. All three suffer from a form of Charcot disease. She was the guest of Ici Matin.
France Bleu Mayenne: You and your two children suffer from Charcot-Marie-Tooth disease. What is the difference with Charcot disease that the general public knows?
Charcot disease is a muscle disorder. For us, it's a neuromuscular disease. It will cause pain in the hands, arms, legs and feet, which will lead to difficulty walking and enormous fatigue. For Raphaël and me, it evolves quite slowly. For Adèle, it's much more complicated. Adèle is eight years old. She needs a power-assisted wheelchair. She has difficulty climbing stairs, she has difficulty writing.
How do your children react? How do they live with this disease?
They are very courageous. I'm very proud of them because it's not easy. It's an invisible illness. When they see us, they tell us that everything is fine, you can't see it physically. Unfortunately, when we see them walking, climbing stairs or crying in pain… But they never complain.
There is this illness that makes you suffer enormously, but you are a family like any other, you have a daily life like any other, you have a job, your children go to school…
We try to live as classically as possible. The children go to school. Raphaël has adaptations to all courses. He participates in sports because it's important. We continue our lives. I'm working. It's not easy, but we must continue the battle. We have hard days, we go to bed very early in the evening. We have different daily lives but we must continue to live like everyone else.
And keep the hope that we will find a cure, medicines to no longer suffer. Is the research progressing?
Yes, research is progressing. For me, I know it will be too late. I am an adult. But I hope to at least save my children. And if it's not for my children, I know there will be generations behind who need this treatment. Moving forward is the battle of my life.
To support the Telethon, you can:
-call him 3637 during the event
-donate online on the AFM website
-by SMS by sending “Don” to 92007
In Mayenne, in 2023, the Telethon raised €371,191.
