A very personal moment was the one shared by deputy Sebastián Keitel in the program From you to you, when he spoke about the death of his brother Luis at 50 years of age. This one suffered Amyotrophic Lateral Sclerosis (ALS), a neurodegenerative disease that he fought for years.
In conversation with Martín Cárcamo, the parliamentarian said that she was detected at 33 years of age. “I was living in Valdivia and at the age of 33 they told him ‘you have Amyotrophic Lateral Sclerosis,'” he recalled, indicating that the prognosis was not very encouraging. “You have 2 years to live. It is a neurodegenerative disease that affects not only the patient, but their entire family“, they told them. “We never understood that, but we understood it over time,” he said.
“It is finally getting trapped in your body with your brain 100% and all its muscles dead.. You are not able to even lift a finger. The only thing you can do is blink and control the sphincter. You talk with your eyes, ”he explained.
His brother’s illness was one of the reasons for entering politics
After talking about the difficulties his brother faced and the changes he had to make in his life due to the illness, the deputy referred to the departure of Luis.
“A third of his life was with ALS. But I don’t try to stay not with death, I try to stay with Luis’s life. Of everything that … I believe that he left us all an incredible message of the day to day, of the struggle, of the perseverance. He agreed with euthanasia, but he did not agree to practice it if it had been legal in Chile, “he explained.
“His only objective was always to see his children grow up,” he added, indicating that his brother’s illness was one of the reasons why he entered politics, since he was interested in coverage of “rare diseases in the country.” “My first bill was for ELA to be included in the Ricarte Soto Law and today it is part of that“, He said.
Sebastián Keitel remembered the departure of Luis
During the conversation, Martín Cárcamo wanted to delve into the moment he learned of his brother’s death. Sebastián Keitel explained that “it was super crazy because I was involved in a session of the Chamber and my phone began to ring. ‘Mom calling’, and I cut her off. Five seconds pass, ‘mom calling’. Short again, and the third time I said ‘something happens’. I answer, and he says ‘Seba come please, Luis is dying’“.
After the warning, he drove his car to where Luis was. “Luis was there in his last 45 seconds of life. I simply took him by the nape of his neck, raised his head. We were all surrounding his bed, his three children, his wife, my mother, the pupi, me and my wife, ”he said.
“I spoke in his ear and said ‘Now Luchito, now, rest, the father is waiting for you, the father is there, rest. He kept fighting, he kept fighting, he looked at us with his desperate eyes, until in a moment he died in my hands. And something very strange happened to me, I never cried, because from that moment my protective role began. If I failed, I was going to fail my mother, her three children, and her wife. And I didn’t cry practically until the next day, ”he said.
“It has cost me a lot, I want to keep his life (…) I want to believe that the moment Luis stopped breathing, he left with my dadHe added.