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Elis Lima Carneiro Dead at 5 ... Had Rare Aging Syndrome

Published October 1, 2026 9:43 AM PDT

Elis Lima Carneiro -- a child in Brazil who rose to fame on social media because of her struggle with a rare aging syndrome -- is dead.

Her Instagram page announced her death ... saying she died Wednesday and inviting folks to her wake Saturday at a chapel in Boa Vista, with the burial taking place immediately after.

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The funeral invitation is open to all people who wish to support the family during the difficult time ... and the post's caption thanks the public for their support.

Elis had more than 1.5 million followers on social media ... and she documented her life as she dealt with the challenges of Hutchinson-Gilford Progeria Syndrome ... a rare disease which causes premature aging in children.

The condition, which is fatal, is extremely rare ... estimates say the odds of being diagnosed are between 1 in 4 million and 1 in 8 million.

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Elis has a twin sister named Eloá who also has HGPS.

Elis' older brother Guilherme Lago told the local outlet g1 that he believed his sister left behind a much larger legacy than he could even imagine ... adding, "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."

Elis was 5.

RIP

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