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Need To Know > World > Social media star five dies after battle with rare ageing syndrome
A five-year-old social media star believed to be one of the world's only twins with a rare rapid ageing syndrome has died, her family announced to 1m Instagram followers.
World

Social media star five dies after battle with rare ageing syndrome

NTK Journalist
Last updated: October 1, 2026 1:58 pm
NTK Journalist Published October 1, 2026
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Elis Lima Carneiro with her mother. (Picture: Jam Press)
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A five-year-old social media star has died after battling a rare ageing syndrome alongside her twin sister.

Elis Lima Carneiro died on Wednesday (30 September).

She and her twin sister Eloá were diagnosed with Hutchinson-Gilford progeria syndrome.

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The sisters were believed to be the only twins in the world with the rare condition.

Their family announced Elis’s death on Instagram, where more than 1m people followed the girls’ journey in Boa Vista, Brazil.

Guilherme Lago, the twins’ brother and carer, paid tribute to Elis in an emotional video, as reported by Need To Know.

A five-year-old social media star believed to be one of the world's only twins with a rare rapid ageing syndrome has died, her family announced to 1m Instagram followers.
Elis Lima Carneiro. (Picture: Jam Press)

He said: “Elis was very strong. She fought so hard, surprised us many times and lived surrounded by love.”

Guilherme added: “Today Elis rests with the Lord.

“It’s very difficult because we didn’t want this to happen, but we can’t be selfish either.

“I’m sure everyone was touched by Elis’s life, by Elis’s story with us, and this is not the end.

“Today we say goodbye with great affection.”

The cause of Elis’s death has not been revealed.

The girls’ story became widely known in 2023 after Brazilian media reported on their diagnosis.

Their family went on to share their everyday lives online, including the girls learning to speak and walk, dancing, playing and swimming.

A five-year-old social media star believed to be one of the world's only twins with a rare rapid ageing syndrome has died, her family announced to 1m Instagram followers.
Elis Lima Carneiro. (Picture: Jam Press)

The account also became a platform for raising awareness of rare syndromes and supporting other families.

On their last birthday in May this year, the twins were separated.

Eloá was in hospital while Elis was at home.

Hutchinson-Gilford progeria syndrome is an extremely rare genetic condition that causes the body to age much faster than normal.

According to paediatric neurologist Charlote Briglia, who treated the sisters, it can accelerate the ageing process by around seven times the normal rate.

Symptoms can include poor growth, hair loss, a lack of body fat and muscle, thin skin, visible veins, a high-pitched voice and stiff joints.

The condition can also affect the cardiovascular system and cause fragile bones and nutritional problems.

“The body’s systems will suffer the consequences of this ageing,” Dr Briglia said.

“The skin is badly affected by this deterioration, and everything becomes more fragile.”

READ MORE: Much-loved screen star 48 dies following long battle with cancer

A five-year-old social media star believed to be one of the world's only twins with a rare rapid ageing syndrome has died, her family announced to 1m Instagram followers.
Elis Lima Carneiro with her mother. (Picture: Jam Press)
A five-year-old social media star believed to be one of the world's only twins with a rare rapid ageing syndrome has died, her family announced to 1m Instagram followers.
Elis Lima Carneiro. (Picture: Jam Press)

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