Adalia Rose Williams death: YouTube star with Benjamin Button syndrome dies aged 15

Adalia Rose Williams was diagnosed with rare genetic condition that accelerates aging when she was three months old

Screengrab from a YouTube tutorial by Adalia Rose Williams (Adalia Rose )

YouTuber Adalia Rose Williams, who had early ageing disorder known as the Benjamin Button disease, has died at the age of 15. She had been diagnosed with Hutchinson-Gilford progeria syndrome when she was three months old.

Williams was “set free from this world” at 7pm on 12 January, a post on her social media accounts said. It received more than 805,000 reactions and more than 158,000 comments on Facebook.

“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,” her family said in the post.

“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 added, while requesting privacy to mourn their loss.

Thousands of users on Instagram, including designer Michael Costello, who had designed Williams dresses for her 13th birthday in 2019, reacted to the news.

“My heart is broken. I received a message at 7pm last night, Adalia Rose Williams was called home to God,” he wrote. “I am at a loss for words and cannot stop crying. Adalia has been so special to every single person that she met. She was an angel.”

He added: “Despite the cards she was dealt with, she had the most positive attitude and such big dreams of helping everyone around her. I love you so much Adalia… Words cannot convey how much you’ve changed my life. I will miss you dearly, friend, and I promise to cherish all the wonderful memories we’ve had together.”

Speaking with the People magazine about their first meeting in December 2019, Costello had said: “It was the cutest. She was so adorable and so sweet.”

“She’s so tiny that you instantly think she’s going to be like a baby, and you want to baby her. But I didn’t realise that she’s 13 years old, and she’s like any other savvy 13 year old. She was a little sassy!” the designer had added.

Williams was three months old when she was first diagnosed with the rare genetic condition that accelerates ageing and has an average life expectancy of 13 years, her mother Natalia Pallante told NZ Herald in a 2018 interview.

Along with premature ageism, other symptoms include dwarfism, lack of body fat, and muscle and joint stiffness.

“When Adalia was born, I think it was she was like a month old and [the doctors] weren’t happy with her growth. 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,” Ms Pallante had said.

The Texas-based teen, who outlived the average life expectancy of 13 years, began vlogging in 2012. She posted about everything from her health updates to fashion and make-up tutorials, eventually amassing over 2.91 million subscribers on YouTube and more than 379,000 followers on Instagram.