Ecuadoran with incurable illness: Only God has authority over death

ACI Prensa Staff, Dec 7, 2023 / 18:30 pm

In the midst of the public debate over the possible decriminalization of euthanasia in Ecuador, a Christian man who suffers from amyotrophic lateral sclerosis (ALS) has emphasized that he rejects that practice because only God has authority over death.

In an interview with ACI Prensa, CNA’s Spanish-language news partner, Silvio Alvarado, a 38-year-old Ecuadorian who came to have faith in Christ through his serious suffering, explained that euthanasia “is not the path I am going to follow. The authority over life and death is not about me, but about God.”

Alvarado was diagnosed with ALS three years ago by a neurologist. ALS is a rare progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord, leading to loss of motor functions. So far there is no known cure.

Researcher Miriam Bucheli, who works at the University of Massachusetts and has been conducting a study on the incidence of ALS among Ecuadorians, discovered in an initial survey of two hospitals that the disease affects 0.2 to 0.6 people for every 100,000 inhabitants.

Despite how difficult it was to accept the diagnosis and progressively lose his physical functions, Alvarado said he is at peace and every day receives the unconditional love and care of his wife, Paulina Oña, and their twin children Inti and Nina. 

Currently he has no mobility in his body and has lost the ability to speak, but Oña helps him get around in a wheelchair and communicate. Through his eyes and winking he can signal “yes,” “no,” or even create sentences letter by letter with help on a keyboard.

It was through this method of communication that Alvarado told ACI Prensa about his encounter with Jesus.

“Thanks to the fact that I have received visits at my house from good friends who helped me clear up the doubts that were arising in my heart and by attending my church on Sundays, I was able to know Christ, understand through the Gospel how Jesus Christ came to this world incarnated as a man, was a child, grew up, was hungry, thirsty, and gave his life through a horrible death to give us salvation,” Alvarado explained during the interview. “So he understands me, because he knows the affliction of my heart and also the physical suffering I feel.”

His wife told ACI Prensa that, as a family, they are very grateful despite the feelings of sadness and anguish during the process of learning about the disease. 

“The suffering and everything we have experienced these three years have allowed us to get closer to God, and we have been able to see Christ as our only hope, since he conquered the world, sin, and death,” she said.

Oña explained that during this process she has been assuming the responsibilities of mother, father, and caregiver but said that walking away from her husband was never an option. 

“I now understand that love, patience, and strength have been provisions given through the grace and mercy of Christ,” she said. “He has supported me from the first second [we received] the diagnosis.”

More research instead of euthanasia

The public discussion about the decriminalization of euthanasia in Ecuador intensified Nov. 20 when the constitutional court began to evaluate the arguments for and against the request of Paola Roldán, a 42-year-old woman who also suffers from ALS and who seeks to end her life.

The case, which could pave the way for euthanasia in the country if the court declares an article of the Comprehensive Criminal Organic Code to be unconstitutional, is in the hands of nine judges. Although there is no set deadline for the ruling, it is estimated that it could be issued within a few months.

During the interview, when asked if he considered the possible decriminalization of euthanasia in Ecuador to be wrong, Alvarado said that “the right thing is to invest in research into the causes that bring on these diseases” as well as formulating “a policy of prevention that would set aside [funds] for the states to allocate resources for the treatment of diseases.”

To date, Ecuador lacks specific legislation to address ALS, and the absence of government action and investment to treat this disease is highlighted in several articles and publications.

According to the Spanish-language “Final Report: Status of Amyotrophic Lateral Sclerosis in Latin America and the Caribbean,” published by the Esteban Bullrich Foundation in 2011, two-thirds of Ecuadorians do not have access to social security, seriously affecting treatment for ALS patients with a lack of means and resources.

Alvarado emphasized that “more cases of people with ALS or other diseases will always arise,” underlining the need for the state to “raise awareness, educate, and develop programs and projects that provide real support to these families and patients.”

Alvarado’s example for the world

Estela Zea, spokesperson for the Yes to Life movement in Ecuador, told ACI Prensa that Alvarado’s position can be interpreted “as that of a conscience that has managed to overcome, through faith, physical pain and psychological anguish with the lucidity to be able to explain to the world that euthanasia is not the best solution but that resources must be invested and that scientific work be done to find the cause, and with the grace of God, the cure for this terrible disease.” According to medical studies, the disease affects 5 out of every 100,000 people in the world.

“Silvio’s testimony could impact the perception that this world, increasingly secularized, has about the relationship between human beings and God, and about the need for man to know God to be truly happy,” she noted.

Oña told ACI Prensa that her husband’s attitude toward the disease “is exemplary” because “he has decided to bequeath to his daughter and son and to myself the example of a life founded on Christ, so that we may have full confidence in God’s promises of eternal life after death.”

“He has told us that afflictions, suffering, pain are part of life itself, and that if the center of our life is Christ, we have the consolation to travel those paths,” she related.

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Oña affirmed with certainty that in the midst of suffering, God has provided them with strength. She believes that the true sign of strength is not to opt for euthanasia but rather to be “an example for his son, his daughter, the people who know him and society itself.”

“Our life as a family is a testimony of caring for each other, where patience, love, companionship, listening are essential and in their entirety come from the mercy and graces of God,” she said.

This story was first published by ACI Prensa, CNA’s Spanish-language news partner. It has been translated and adapted by CNA.