Elis Lima Carneiro, a Brazilian child Instagram influencer with Hutchinson-Gilford Progeria Syndrome (HGPS), a rare and fatal condition that causes rapid aging, has died at five. Her family said she died Wednesday, Sept. 30, 2026, in Boa Vista, in the northern state of Roraima, and that the cause was a severe lung infection.
Her older brother, Guilherme Lago, broke the news in a video on the Instagram page he shares with his sisters. “Hoje a Elis descansa no Senhor,” he said, which translates to “Today Elis rests in the Lord.” The page, where the family documented her childhood, has more than 1.3 million followers on Instagram.
A Goodbye in Boa Vista
The family held a wake at the Shalon funeral home chapel in Boa Vista, and burial followed at Parque Campo da Saudade Cemetery, with a 10:30 a.m. interment. The family shared the arrangements in their post, and the announcement drew more than 936,000 likes and nearly 100,000 comments by Oct. 1.
Lago later praised his sister’s courage. In the video, he said his sister “was very strong” and “lived surrounded by love.” He told Brazil’s G1 that her story “is not about how she left, but about what she taught.”
Twins Living With Progeria
Elis was born May 4, 2021, and shared a diagnosis with her twin sister, Eloá. The two are widely described as the only known twins with the condition, and they drew national attention in 2023 as the first cases treated by Roraima’s public health network. HGPS is genetic, and people with it live an average of about 14.5 years, according to the Cleveland Clinic.
The first signs appeared when the twins were about four months old, when the family noticed hair loss and changes in their skin. In May, the sisters spent their fifth birthday apart because Eloá was in the hospital. Eloá remains in the family’s care in Roraima.
Their account did not trade on spectacle. The parents posted everyday scenes of playtime, doctor visits and time with relatives, and used the page to raise awareness of rare diseases. The Instituto Raridade de Roraima, a nonprofit supporting people with rare conditions, called Elis “a rarity in the most beautiful sense of the word.”
Her mother, Eleismar Carneiro, remembered a girl who laughed at everything. She said: “She was always smiling, outgoing and, when she didn’t like something, she would complain.”
In a post on Thursday, Oct. 1, the family thanked those who came to the farewell. “Our little girl had a captivating smile, so many laughs and a unique way about her that won over so many hearts,” they wrote. “We will miss you immensely, but we want to remember you exactly this way: happy, playful and surrounded by so much love.”
