They were twin sisters with the same disease. Now one of them is gone… 💔 Elis Lima Carneiro died at age 5 in Boa Vista, Brazil.
Her family announced it on Instagram on Wednesday, September 30, on the same account where more than a million people had watched her learn to talk, walk, dance, and swim.
She had Hutchinson-Gilford progeria syndrome, a genetic disease that accelerates aging in children and affects between 1 in every 4 million and 1 in every 8 million people. There is no known cure, and Elis and her twin sister Eloá are believed to be the only twins in the world with this diagnosis.
The girls’ story became widely known in 2023, when Brazilian media began sharing it.
Since then, their brother and caregiver, Guilherme Lago, became the face who explained to the world what it meant to live with such a rare disease. He said Elis brought visibility to those who have it, and said in a video that “this is not the end”.
The wake was held on October 1 at Shalon Chapel, and the burial took place at Parque Campo da Saudade Cemetery. Eloá, who has the same disease, survives her twin sister.
Elis is gone, but the account they shared is still there, with their laughter, dancing, and games.