Photo credit: Instagram/Paola Roldán
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Paola Roldán was diagnosed with ALS three years ago
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Paola Roldán's life took an unexpected turn in August 2020.
She fainted while doing yoga. And a while later he felt like he was drowning while pushing the stroller.
The tests initially showed nothing. But given the ongoing unease, Paola decided to investigate further.
ALS is a progressive degenerative disease for which there is no cure.
Neurons in patients with this disease deteriorate or die and are no longer able to send messages to the muscles.
This leads to muscle weakness, involuntary contractions and the inability to move arms, legs and body in the short and medium term.
Paola has been through everything.
Today, at 42, she is bedridden and living with the help of a ventilator. He only has control over the muscles in his face.
In the midst of all the suffering, she decided, together with her husband Nicolás and their young son Oliver, to lead a public fight to make euthanasia a right in her country, Ecuador.
She asked the Constitutional Court of Ecuador to declare Article 144 of the country's penal code unconstitutional, which imposes penalties of 10 to 13 years in prison for simple killing, including the practice of euthanasia.
“I have lived a full life and know that the only thing I deserve is a dignified death,” the Ecuadorian said in November in the middle of the trial.
After several months of deliberations, the court granted their application last Wednesday (July 2nd) and issued a positive decision. This made Ecuador the ninth country in the world to decriminalize euthanasia in extreme circumstances.
Paola's father, Francisco Roldán, said he was pleased that his daughter had achieved a “historic achievement and a legacy for Ecuadorian society.”
But he admitted he is “heartbroken because the outcome that we know could occur and the family has been dealing with, the death of our daughter, is very serious.”
How the illness changed your life
After the diagnosis, Paola tried everything. Scientific and alternative treatments, always hoping that your body will cope with the disease.
But a few months after August 2020, the symptoms became more and more obvious.
Photo credit: X/Paola Roldán
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Before her diagnosis, Paola led an active and healthy life
Since then, she has been in the hospital several times, suffering from infections and her body has changed radically.
Attacks of suffocation also showed that his life was at stake. Among other things, ALS leads to a weakening of the swallowing muscles, which makes eating more risky.
According to the newspaper El País, the apartment where she lives about 20 minutes from the capital Quito had to be adapted to her new reality by installing a hospital bed in the former dining room.
On January 17, Paola shared through her account on X (formerly Twitter) some of what she has to deal with every day.
“Today marks 162 days since I filed my lawsuit in court. For many, 162 days is nothing, but for me it was 3,888 hours of survival,” she said.
“Since August 8, I have failed six doctors, dozens of attacks of suffocation, ten days between Christmas and the beginning of this year with crises so serious that they anointed me with oil and I said goodbye to my family.” My body started rejecting intravenous nutrition, so I've been living on IVs for 17 days. I don't know how much time I have left in this slow torment…”
In another post on the same social network, Paola revealed the high cost that the disease imposes on her and her family.
This is what you consider the three nurses who look after her “24 hours a day, 7 days a week”, the more than “3,500 treatments I have had in these three years” and the countless trips abroad “looking for help”. .
“I have done everything, there is no treatment or medication that can save me and I can guarantee that I will not have a minute without physical pain, let alone emotional pain,” he explained.
“Could you keep me drugged with morphine so I don’t feel like life is for you?”
The family
Perhaps the hardest part of the illness is watching her son Oliver, who is almost four years old, grow up.
On her social networks, Paola said that for a year she has been making a “time capsule” of gifts for her future birthdays, a box with memories of her, his first memories and the most important moments of his life like falling in love for the first time and for Go to university.
“It was difficult to think of a symbol for each of these moments, especially because I don't know what my son will like or who he will become. “I didn’t want these gifts to become a requirement of what I wanted for him, but yes, to offer him more and more freedom,” he added.
The Ecuadorian also said that while she always assumed she would be at all of her son's presentations including moments like his graduation ceremony that was not what life had in store for her.
She also spoke about her husband Nicolás, who has fought alongside her for the past three years.
“Without my husband’s unconditionality and resilience, none of this would have happened,” she explained in a November 2023 Instagram post.
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According to her lawyers, Paola requested access to active euthanasia because she realized that over time she would also lose the ability to communicate with her husband and son, who constantly accompany her.
“Onedimensional”
The decision to come out on social media and fight for a dignified death came at a price.
Paola stated that at some point she even regretted drawing attention to her and her family's situation.
In her own words, to some she is “brave and hero,” while to others she is “coward and villain.”
“It's like a steamroller has turned me into a onedimensional caricature,” she noted in X last November.
“A month and a half ago I was a mother, sister, daughter, lover or just Pao. Now I'm 'a 42yearold woman with ALS fighting for euthanasia,'” she added.
Paola didn't know if she would still be alive when the court decided on her application.
When she learned in early February that the decision would be announced in a few days, she said:
“I survived and now I want to see if the blood of justice and humanity runs through the veins of this country. Or whether we continue with the regressive thinking that glorifies suffering.”
In a virtual press conference following the announcement of the court decision, Paola stated:
“I thank everyone, because today Ecuador is a country that is a little more welcoming, free and dignified.”
She also explained that she will spend the next few days with her family to understand what the decision means. Because “getting information is different from dreaming about it.”
The verdict is “immediate compliance.” And the decision to make it happen is now in Paola’s hands.