She suffered from a condition that affects fewer than 500 children worldwide
Adalia Rose, a YouTuber who suffered from a real-life ‘Benjamin Button’ disease, has died at the age of 15.
The teenager from Texas was diagnosed with Hutchinson-Gilford progeria, a genetic condition also known as Benjamin Button disease when she was just three months old.
The condition is extremely rare, affecting less than 500 children in the world, and causes extreme accelerated ageing with sufferers having an average life expectancy of 13.
But Rose amassed millions of followers and subscribers on social media as she grew, documenting her life with the condition.
At the time of her death, she had 2.91 million subscribers on YouTube and 379,000 Instagram followers.
A post on her Instagram page from her family read: “January 12, 2022 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,’ they went on.
“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.”
https://www.instagram.com/p/CYqNhVVsGpL/
She had posted on her page just hours before the sad news of her death was announced.
In 2018, Adalia’s mother, Natalia Pallante, spoke to the New Zealand Herald about her daughter’s life, saying that doctors realised something was wrong within a few months of her birth.
“When Adalia was born, I think it was she was like a month old and they weren’t happy with her growth,” she said.
“That was one of the symptoms that first popped up and then it was also that the skin on her tummy was really tight and just different looking.”
At just three months old, she was diagnosed with the condition, and soon started losing her hair.
Natalia’s partner said they treated her just like “a normal 11-year-old and try to give her the best life.”
Some of Adalia’s most popular videos included her dancing to PSY’s Gangnam Style and Vanilla Ice, which went viral in 2015.
She met a number of celebs in her life, and in December 2019 was gifted two dream dresses by Jennifer Lopez’s designer Michael Costello for her 13th birthday.
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