Elis Lima Carneiro’s family announced her death on Instagram.
The Brazilian social media star, 5, passed away on September 30, according to the announcement her relatives posted to the account that had chronicled her life with Hutchinson-Gilford Progeria Syndrome. Her wake was held October 1, and the family invited followers to attend or send solidarity from afar.
“Everyone who wishes to say goodbye to Elis, offer their solidarity to our family or accompany us on this last path will be very welcome,” they wrote on the platform. “Thank you for all the love you always had for our little one.”
The family later shared footage from her funeral with a brief caption: “Thank you for everything, Elis.”
Her brother, Guilherme Lago, spoke to the Brazilian outlet g1 about the reach she achieved despite her brief life. “She touched many people, gave visibility to rare diseases, and showed that, even in such a short life, it’s possible to leave behind an immense story,” he said. He continued: “She taught about strength, courage, love, and about valuing life every day. I’m sure she left a legacy far greater than we can fathom now.”
Hutchinson-Gilford Progeria Syndrome, or HGPS, stems from a single tiny genetic mutation. The condition produces accelerated aging markers — balding, wrinkled skin, slowed growth, failure to gain weight normally — that typically emerge between a child’s first and second birthdays. Though infants appear healthy at birth, the syndrome is always fatal, with death most often resulting from heart attack or stroke. Cleveland Clinic notes that lonafarnib can sometimes slow disease progression. The odds of diagnosis fall between 1 in 4 million and 1 in 8 million.
Elis was not the only member of her immediate family facing the condition. Her twin sister, Eloá, has also received the same diagnosis. The siblings are believed to be the only twins in the world known to share the HGPS diagnosis.
The Instagram comments beneath the family’s announcement filled rapidly with tributes from followers who had tracked Elis’s journey. “Rest in peace little girl,” one wrote. Another added: “Elis has rested, but she took a piece of the heart of the millions of followers. See you soon, Elis.”
The family’s account had built its following through regular documentation of Elis’s daily experiences, medical appointments, and moments of joy, creating a rare public window into a condition that most families navigate in isolation. That visibility, her brother noted, became part of her unintended contribution to broader understanding of diseases that affect vanishingly small populations.
The syndrome’s extreme rarity means that most research advances depend on small patient pools and heightened public awareness. The Lima Carneiro family’s decision to share Elis’s life publicly placed them among a handful of families worldwide who have allowed similar documentation, a choice that brought both support and scrutiny.
Elis’s death leaves Eloá as the remaining twin with the diagnosis, though the family has not publicly addressed her current condition or prognosis. The g1 interview with Guilherme Lago did not specify whether Eloá’s disease progression matches her sister’s timeline or whether she is receiving lonafarnib treatment.