Adalia Rose Williams died in January at the age of just 15 due to complications arising from progeria syndrome.
The famous YouTuber was a fashion and beauty blogger, who also often discussed her health condition.
Her death was greeted with thousands of tributes across social media.
So who exactly was Adalia Rose, what did she post about - and what is progeria?
Who was Adalia Rose?
Adalia Rose Williams was an American YouTube star who was born on 10 December 2006.
She did upbeat videos on fashion and beauty, as well as candid updates and explainers about her rare medical condition.
After joining the vlogging site in 2012, the Texan amassed 2.91 million subscribers and her videos have been watched almost 340 million times.
Her YouTube total passed the three million mark after her death.
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.
She died on 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.”
Adalia Rose’s funeral was held at the Weed Corley Fish Funeral Home in Austin, Texas on 24 January 2022.
What is progeria?
Hutchinson-Gilford progeria syndrome (HGPS) or progeria is also unofficially known as ‘Benjamin Button disease’, after the Brad Pitt film that sees a boy born old before growing younger.
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.
- 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.