In 2014, the popularity of the ALS Ice Bucket Challenge went viral, with social media users posting videos left and right to spread awareness of the disease. Many people, however, may not have been familiar with ALS itself.
ALS stands for amyotrophic lateral sclerosis, a disease that affects the brain and spinal cord connection to the muscles of the body. This eventually leads to loss of motor function, speech impairment/loss, paralysis, and eventually loss of breath control. While there is no known cure, there are a growing number of medications that can be used to slow the disease and support the lifestyles of those with ALS. But instead of reaching out with more support for the families dealing with this and other debilitating diagnoses, Ecuador is considering decriminalizing assisted dying for people with ALS.
This p0litical debate was brought on by a lawsuit filed on November 20, 2023, by Paola Roldán, a 42-year-old Ecuadorian woman who has been battling ALS for the past three years. She is seeking to declare article 144 of the Comprehensive Penal Code as unconstitutional; this would decriminalize the act of helping someone to commit suicide. The current penalty for such an act is up to 13 years in prison. In her lawyer’s words, “Paola needs legal authorization to have a mercy killing, because if someone assists her in the death, he could face a sentence of up to 13 years.”
“Death with dignity” is the phrasing used to further Roldán’s argument.
READ: Study: Assisted suicide can be painful, prolonged and inhumane
However, another Ecuadorian citizen living with ALS disagrees. Silvio Alvarado, a 38-year-old father and husband living with ALS, believes that there is still value in his life even though there is suffering. A large part of his perspective stems from his faith in Jesus Christ.
“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… so He understands me, because He knows the affliction of my heart and also the physical suffering I feel.”
Alvarado lives with his wife, Paulina Oña, and their twin children, Nina and Inti. “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,” Oña said. At this time, Alvarado has lost the ability to speak and move, and uses technology and winking signals to communicate. Yet, he remains at peace, thanks to the loving support of his family and the example of Christ’s suffering and resurrection.
Ecuador — unlike the U.S. — does not have the abundant resources to effectively support people with ALS. Alvarado encourages “a policy of prevention that would set aside [funds] for the states to allocate resources for the treatment of diseases,” and more research into the cause of ALS.
The ALS Association, based in the U.S., boasts an entire resource list of ways that those with ALS can receive in-person emotional and physical support, everyday life adjustments, as well as medical treatments. “People do not have to suffer stoically the disabling feelings associated with depression, anxiety or the other understandable feelings patients may experience,” the Association writes.
There is always hope, even in the face of uncertainty.
