TESTIMONY
Lili's son is twelve years old and suffers from Gilles de la Tourette syndrome. Lili had already called Olivier Delacroix on "La Libre antenne". The latter then advised him to turn to a specialist, based in Grenoble, who offers to operate on patients with Gilles de Tourette syndrome by implanting electrodes in their brains. At the microphone of "La Libre antenne", on Europe 1, Lili gives news of her son who will be able to benefit from this operation when he is older.
>> Listen to Lili's testimony in full here
"I have a 12-year-old child who suffers from Gilles de la Tourette syndrome, among others. I had already phoned you and you advised me to turn to the CHU de Grenoble. I went to La Salpêtrière with "My son. We met the professor who follows him. He told me that he was aware that this operation existed, but that my son was too young. I forced him to send his file. He agreed and said to me: "As soon as he is eligible, we will send you the treatment protocol".
It's a big step, but it's very anxiety-provoking for my son. Professor de la Salpêtrière explained to her well what the intervention consisted of. It is not harmless, it is very invasive since it is a surgery on the brain. It really impressed him. I explained to him that he will be asleep and that by then he will be taller and see things differently. He replied, "Do you think I won't be invaded anymore?" This expression made me smile, because that is absolutely the term. He is very lucid about his difficulties.
" He is on the waiting list to receive a treatment protocol "The Grenoble pole contacted me, they received my son's file. He is on the waiting list to receive a treatment protocol because he is still too young. I'm happy. I do not know if it will work, but I tell myself that we will have tried everything and that we will have solved the problem. If it can free him, it's wonderful.
We watched the program you told me about (Editor's note: "In Olivier's eyes - I am my worst enemy"). The documentary sent back things that were hard to see because he recognized himself. He put his hand in front of his eyes. He said he was not alone, but it was terrible to see. It gave him hope too. He identified and projected himself. It allowed him to say to himself: "I want it to change".
>> Find Olivier Delacroix's Free Antenna in replay and podcast here
My son opened my eyes and told me to get closer to parents who have children who suffer from Gilles de la Tourette syndrome. Until then, I had made no move in this direction. I was always alone. I inquired and there are associations. I think it would be good for him to see other children and that I also meet parents. I don't understand why I didn't do it before, I must have had my head in the handlebars or I was afraid.
It is hypersensitive to all stimuli. It is a sponge, so sometimes you have to try to free a little space in your head to bring it well-being. My son, his leitmotif is to say: "My brain does not work like the others". He always has the impression of being more wobbly than the others. He also said to me: "I don't know if it will work on me, do you think that one day I will be normal?". It's a future prospect for us. "