A 15-year-old girl who documented her life with a rare health condition died on Tuesday and will be remembered for the lives she touched along the way. Adalia Rose Williams was born with Hutchinson-Gilford progeria syndrome, but wasn't shy when it came to showing the world her big, full life.
Adalia’s passing was shared via Instagram and Facebook on January 13.
In matching posts shared on the social media platforms, it was revealed that Adalia died the day before, on January 12, 2022, at 7 p.m.
“Adalia Rose Williams was set free from this world,” her Instagram post reads. “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," the post stated.
“I really wish this wasn’t our reality but unfortunately it is,” it continued. “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.”
For years, Adalia shared her story on her YouTube channel, where she has nearly 3 million subscribers.
On YouTube, Adalia would share things like recent trips she’d taken, makeup tutorials, and vlogs with her family. She also would share updates about her condition, which she was diagnosed with when she was a baby. According to the National Organization of Rare Disorders, Hutchinson-Gilford progeria syndrome is a “rare, fatal, genetic condition of childhood with striking features resembling premature aging.”
The signs of Hutchinson-Gilford progeria often show themselves at about 24 months of age, with profound delays in weight and height.
“They also develop a distinctive facial appearance characterized by a disproportionately small face in comparison to the head; an underdeveloped jaw (micrognathia); malformation and crowding of the teeth; abnormally prominent eyes; a small nose; and a subtle blueness around the mouth,” the website states. “In addition, by the second year of life, the scalp hair, eyebrows, and eyelashes are lost (alopecia), and the scalp hair may be replaced by small, downy, white or blond hairs.”
HGPS is considered extremely rare and is not passed down genetically.
It’s caused by “a single-letter misspelling in a gene on chromosome 1 that codes for lamin A, a protein that is a key component of the membrane surrounding the cell’s nucleus. The abnormal lamin A protein produced in HGPS is called progerin,” the NORD website notes.
USA Today reported that the condition is often compared to the "Benjamin Button" disease, in reference to the short story "The Curious Case of Benjamin Button" written by F. Scott Fitzgerald, which was later turned into a movie starring Brad Pitt where the main character ages backwards.
The average lifespan of someone with HGPS is 13 years old, although some with the condition have been known to live to as old as 20.
After news of Adalia’s passing became public, thousands of people wrote in with their condolences. Including designer Michael Costello who once worked with Adalia in 2019, making her a custom dress for her 13 birthday.
"My heart is broken," Costello wrote in a post commemorating the teen’s passing. "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."
“Despite the cards she was dealt with, she had the most positive attitude and such big dreams of helping everyone around her,” he continued. “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.”
A GoFundMe account has since been created by family friend, Ylianna Dadashi, that has since raised over $17,000 towards her funeral costs.
Source: cafemom.com
