If World Amyotrophic Lateral Sclerosis (ALS) Day takes place on June 21, every year, because it is the longest day, on March 11, 2024, there has been a lot of talk about this degenerative disease. television. After Antoine, the man who shares the life of Marina Carrère d’Encausse, in Télématin, on France 2, it is Mario Barravecchia, from Star Academy 1, who testified on CNews.
“My dad left in six months“
Reached by telephone during Jean-Marc Morandini’s show, while this Monday, the President of the Republic Emmanuel Macron spoke out in favor of very strictly regulated “assisted dying” in France, the singer shared the experience of his father, who also suffered from Charcot’s disease.
He explained : “Charcot disease is a neurodegenerative disease. It is characterized by a progressive loss of neurons, brain and spinal cord. The muscles of the body atrophy and this ends in paralysis of the respiratory muscles. It is a terrible disease with a life expectancy of between 2 and 5 years. Today, there is no way out.”
And added: “My dad left in six months. In the last few weeks, he asked me very often to let him go. It is a dilemma for a son to respond favorably to the request of his father who no longer wants to see himself suffer. […] I certainly should have respected my father’s word a little earlier and allowed him to leave with less suffering.”
A terrible memory since he remembers: “The last two/three days he was in a sort of coma. The doctors told us that there was no longer any way out. When a patient has an incurable illness and is suffering terribly, I think that we must give the patient the choice of being able to die peacefully with the agreement of the medical profession.”
“The moment I unplugged the machine…”
And if his father asked him to intervene, by administering medication, Mario Barravecchia admits: “I felt like I was killing my father. It was an atrocious gesture, very difficult. He told me that if he had to breathe with a machine, I had to unplug it. I told the doctor family: ‘I’m going to unplug the machine and you will inject the product’. Once the members of my family left, I stayed alone with him and that’s where he took his last breath. It was a release for him.”
Ultimately, he helped his father die by unplugging him. He also testifies: “The moment I unplugged the machine was a moment that will stay with me for life. I thought about the childhood I had with him, everything he did for me. I owe him a lot.”
F.A.