Paola Roldan, a woman suffering from ALS who managed to legalize euthanasia in Ecuador, dies

Paola Roldan likes to say that she loves life. This is how his interview with EL PAÍS began, in which he made his story public for the first time in October 2023. He was living the extra time stolen from science, which was predicted to lead to his death a few months earlier due to his deteriorating health. But she wished to live long enough to know the outcome of a lawsuit she sent to the Constitutional Court that sought to legalize euthanasia in Ecuador. They achieved it a month ago, a milestone for Ecuador that has also inspired organizations and patients throughout Latin America. Roldan died this Monday in Quito. The exact circumstances of death are not yet known.

She faced a legal battle to cope with the intense pain she felt throughout her body due to amyotrophic lateral sclerosis, ALS, which she was diagnosed with more than three years ago. ALS is a degenerative disease that worsens over time and destroys the nerve cells that control muscles that perform voluntary movements. Within a few months, Paola lost all the muscles in her body except her facial muscles. She spoke slowly and with difficulty because of the respirator that kept her alive, but every sentence she uttered was a deep reflection on life.

On February 7, 2024, the Court’s judges declared constitutional the right of people who request an assisted dying procedure “because of serious and irreversible physical injury or intense suffering resulting from serious and incurable disease.” That day, with a broken voice, Paola tried to express in words what she felt. Her feeling was not one of celebration, she knew what that decision meant to her and to other people suffering from terrible diseases with whom she came in contact, whose suffering she also knew. Nor did he believe that a legal battle that could have taken years could have been resolved in six months.

—Can you believe I managed to see it? When I started it, everyone told me it was impossible, it would take three years for the court to resolve it and I wouldn’t be able to see it. And I said okay, it doesn’t matter. It’s like you plant a tree and everyone sits in the shade. The day he came to know of the sentence, he said, “I was able to see it and I am also sitting in the shade of the tree which I had planted.”

Legalizing euthanasia gave him the freedom to end his life whenever he wanted. But with renewed vigor, she realized she had to leave something else behind: a network of psychological support for ALS patients and their families, which she had devoted herself to building in the last days of her life. “My family and I have been fortunate to receive support from professionals, as many have helped us, but these treatments mean an expense of at least about $800 per month, which is why many people struggle with these diseases alone. And I know how hard it is.” Paola said in a conversation with EL PACE a few days before she died. I had involved some doctors in the project, but I had to know that I have no idea how many people I need to help, and I wanted to start with a database to make ALS cases transparent in Ecuador, where there is no accurate record of how many exist. The Ministry of Public Health classifies them as motor neurone diseases. As of 2020, 58 have been counted in the public system, but it is not known exactly how many of them are currently living with the disease.

From her bed in the living room of her home in Quito, she organized everything for her family: the day’s meals, the clothes her four-year-old son wore when he woke up each morning, schoolwork and gifts, letters. And photos that he saved in a time capsule for those special dates until he turned 40. From the same location where she couldn’t go, she also held virtual meetings with people who volunteered to support her idea of ​​giving other ALS patients some pain relief and responded to messages from people who wanted help in implementing euthanasia. Have faced obstacles. The court’s decision did not stop their fight until their voice faded on March 11. Surrounded by her family, as Paola wanted at that moment, she died. There will be no black clothes at her funeral, I can’t guarantee that people won’t cry when they remember her, but she will try to ease the pain with her favorite song, live life, by Coldplay. Because even without her here, Paola would like to remind you that life should be celebrated and the true struggles you spend your life in.

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