Adalia Rose death: who was YouTube star with ‘Benjamin Button’ disease - and what is progeria syndrome?

Hutchinson-Gilford progeria syndrome sees children age rapidly due to a genetic abnormality

If you have read The Curious Case of Benjamin Button or seen the Brad Pitt film of the same name, you will be familiar with the concept of children ageing before their time.

But while the story is a fictional tale of a man getting younger as he grows up, there is a real-life medical condition unofficially known as ‘Benjamin Button syndrome’ that pans out slightly differently.

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It sees young children age rapidly soon after birth.

This week, the most famous person with the disease - Adalia Rose - died at the age of 15.

So who exactly was Adalia Rose, what did she post about - and what is Benjamin Button syndrome?

Adalia Rose died on 12 January aged 15 (image: Adalia Rose/YouTube)

Who was Adalia Rose?

Adalia Rose Williams was an American YouTube star who did upbeat videos on fashion and beauty, as well as candid updates and explainers about her medical condition.

Since joining the vlogging site in 2012, the Texan has amassed 2.91 million subscribers and her videos have been watched almost 340 million times.

The teen also had more than 12.5 million followers on Facebook and 379,000 followers on Instagram.

In one of her last videos uploaded to YouTube in November 2021, it was revealed Adalia Rose had had a mystery illness which had led to her losing her hearing and had meant she had been unable to post videos for six months.

In one of her last videos, Adalia Rose revealed she had had a mystery illness (image: Adalia Rose/YouTube)

She died on Wednesday (12 January).

In a post shared across her social media accounts which announced her death, Adalia Rose’s family said: “At 7pm Adalia Rose Williams was set free from this world. She came into it quietly and left quietly, but her life was far from it.

“She touched MILLIONS of people and left the biggest imprint in everyone that knew her.

“She is no longer in pain and is now dancing away to all the music she loves.

“I really wish this wasn’t our reality but unfortunately it is. We want to say thank you to everyone that loved and supported her. Thank you to all her doctors and nurses that worked for YEARS to keep her healthy. The family would now like to mourn this huge loss in private.”

What is Benjamin Button syndrome?

Benjamin Button syndrome is the unofficial name for Hutchinson-Gilford progeria syndrome (HGPS) or progeria.

The rare genetic condition affects one in every four million babies and sees them age rapidly because their cells ingest a protein called progerin that is released by an abnormality in their genes.

In Adalia Rose’s case, she was diagnosed with the condition at three months old.

While she made it to the age of 15, most children with HGPS don’t see their 14th birthday.

Symptoms of the disease do not become apparent immediately after birth, but usually begin to occur during the child’s first year.

These include:

  • Slow growth in terms of both height and weight
  • A big head
  • Large eyes, which the kid can’t close properly
  • A small lower jaw
  • Ears that stick out
  • A high-pitched voice
  • Hair loss, including eyelashes and eyebrows

As children with HGPS grow up, they get diseases typical in people aged 50 and over, such as bone loss, hardening of the arteries and heart disease.

Children who have it tend to die of a heart attack or a stroke.

Currently, despite research, there is no cure for the disease.

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