Mila Seidl has asked for urgent help to secure medical treatment for her husband, Brazilian influencer Lito Sousa, who has a rare neurodegenerative disease.
Seidl, 41, shared a video on social media on Monday morning calling for public pressure on authorities to help Sousa, 59, after his diagnosis with Creutzfeldt-Jakob disease.
She explained that while several contacts had reached out to offer support, time remained her greatest worry. Under the rules of one experimental study, eligible patients must score at least 15 points on a scale ranging from zero to 20, and she noted that Sousa had already reached a score of 16.
Seidl warned that it would make no sense to travel for treatment if her husband suffered further cognitive loss. She urged the public to keep pressing Brazil's Federal Government and the Ministry of Foreign Affairs, known as Itamaraty, to intervene and defend a citizen's right to healthcare and life, pointing out that an effective treatment exists outside Brazil.
Search for clinical trials abroad
Seidl has spent recent weeks searching for available openings in medical research programs across the United States and Europe. On Sunday night, she revealed that the family had focused on an advanced Phase 3 study, where patients receive the active therapeutic drug rather than an inert placebo.
Researchers running the trial informed the family that patient recruitment was temporarily closed, though Seidl noted that this communication had arrived a few days earlier.
Creutzfeldt-Jakob disease is an incurable neurological condition triggered by abnormal proteins known as prions. The condition destroys brain tissue rapidly, causing severe memory loss, physical instability, and swift cognitive decline. Because the illness worsens quickly, medical experts consider immediate diagnosis and rapid intervention essential for anyone seeking experimental therapy.
Itamaraty, Brazil's foreign ministry, manages international diplomacy and consular assistance for Brazilian citizens living or travelling abroad. In exceptional medical emergencies, families frequently look to diplomatic channels to help coordinate communication with foreign medical institutions or resolve complex cross-border administrative hurdles.
Rumours about Harvard waiting list
In her video update, Seidl also took time to rebut false rumours circulating on social media regarding Sousa's medical care. She emphasised that the effort to find and secure foreign treatments was conceived and directed entirely by the couple themselves.
She acknowledged that Sousa held significant public influence and said many people who admired his work were actively helping them move forward, but she reiterated that the family remained in complete charge of the search.
Seidl firmly dismissed claims that Sousa was currently on a waiting list at Harvard University. She explained that Harvard would open applications on October 20, at which point program directors could evaluate whether Sousa met the strict medical criteria to join the trial.
Sousa is widely known across Brazil as an aviation specialist and digital content creator who built a substantial online audience explaining aviation safety and aircraft operations. As he focuses on his health, colleagues and friends have shared responsibilities to keep his digital channels operational.
