Five years ago, the wife of production assistant Whillyan de Freitas Marin, 34, Thais de Araújo, 28, noticed the first signs of a neurodegenerative disease in her husband. She noticed that he sometimes forgot details from the care routine for their son Noah, who was a newborn at the time.
Whillyan's condition was once diagnosed as multiple sclerosis, but years later it was reassessed as Creutzfeldt-Jakob disease. This is the same health condition identified by Lito Sousa, aircraft pilot and influencer who shared living with the progressive advancement of the disease last month.
Like Lito, Whillyan and his family began seeking experimental drug studies abroad that could address the health problem, in an attempt to circumvent the lack of approved medications for the treatment of the disease.
Despite attempts with foreign researchers, neither of them managed to be included in the studies as of the time of the article's publication.