Brazilian influencer Lito Sousa, host of the aviation YouTube channel Aviões e Músicas (Airplanes and Music), made his first public appearance on Sunday (23) since his wife revealed he had been diagnosed with Creutzfeldt-Jakob disease (CJD). In a video posted on Instagram, the former aviation mechanic asked for a spot in experimental studies of the disease, a rare, fast-moving neurodegenerative condition with no known cure. The mobilization around his case took over Brazilian social media and reached the skies of the United States: on Monday night (24), a Brazilian pilot drew the word "Lito" with his flight path over Texas.
Recorded in English, the appeal was addressed to the drugmaker Ionis Pharmaceuticals, the Broad Institute, Harvard University and the Mayo Clinic. "This is an urgent appeal," Sousa says at the start of the recording, according to BBC News Brasil. International communications specialist Ewandro Magalhães then takes over, describing CJD as a rapidly progressing, mostly fatal disease for which there is still no standard treatment protocol. The video asks viewers to share it and tag the institutions named: "Every minute matters."
According to Mila Seidl, the influencer's wife, his condition has worsened quickly and he reportedly lost part of his vision overnight. The family sees two research efforts as the most promising bets: one linked to Harvard, in the United States, and a multicenter study with research centers in France, Germany and England, which she says is at a more advanced stage. The clinical trial of the experimental drug ION717, developed by Ionis, is also a target of the family's outreach. For now, neither of the two studies is accepting new participants, and Seidl says she has contacted the teams behind both to ask for an exception to the inclusion criteria. "I have a 0% chance, but if I have a 1% chance anywhere, we want that 1%," she said in the video.
Name drawn in the Texas sky
The wave of support had an unusual chapter on Monday night. Flying a Cessna 150M, Brazilian pilot Enderson Rafael spent just over three hours over the Dallas area tracing his friend's name in the sky, according to G1 and Estadão. By the pilot's account, the drawing stretched about 80 kilometers long and 30 kilometers high, "bigger than São Paulo." The route, recorded by the tracking site FlightRadar24, briefly ranked among the most watched flights in the world on the platform.
Rafael said he was one of the first passengers Sousa ever carried when the influencer began flying Cirrus aircraft in São José dos Campos, in the countryside of São Paulo state. "Today this is my way of paying tribute to this great name in aviation, and a great friend as well," the pilot said in a video posted after landing.
What is Creutzfeldt-Jakob disease
CJD is caused by a change in the prion protein, which is normally present in the body without causing harm. In rare cases, the protein changes shape and "contaminates" healthy proteins around it, spreading degeneration through the brain, researcher Cristiano Aguzzoli, of the Brain Institute of Rio Grande do Sul (Inscer), told BBC. The estimated incidence is only 1 to 2 cases per million people per year. In general, the first signs are rapidly progressive cognitive changes, followed by motor symptoms. According to neurologist Felipe Schmidt, of the HUPE/Uerj hospital in Rio de Janeiro, Sousa's case has a particularity: the disease showed up first through motor symptoms, with lucidity preserved, a pattern different from the most common one.
There is no cure and no therapy able to halt the disease's progression. Care focuses on controlling symptoms and keeping the patient comfortable, such as treating pain and involuntary movements, Schmidt told G1. Aguzzoli noted that clinical studies are testing drugs able to reduce the production of the prion protein, the same logic behind ION717, but warned that the disease's fast course, its low incidence and the lack of early biomarkers make developing an effective treatment harder. In general, about six months pass between the first symptoms and the most severe stages, according to BBC.