AUSTIN (KXAN) — Adalia Rose Williams, a 15-year-old Austinite who shared what life was like living with a rare condition and brought bright positivity to millions on social media, died Wednesday.
Williams was born with progeria, also known as Hutchinson-Gilford syndrome. The condition causes children to age quickly and has no cure, but “ongoing research shows promise for treatment,” according to the Mayo Clinic. The condition is very rare — there are about 400 children living with it worldwide, according to the National Organization for Rare Disorders.
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“She came into (the world) 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,” said a post on her Facebook page, which also thanked the doctors and nurses who helped her through the years.
KXAN first met Williams in 2012 at a fundraiser for progeria research, when she was five.
Her father told KXAN at the time “we speak life, love, happiness, peace in our house — and we believe that’s really helped with her attitude.”
Earlier that year, her family started a Facebook page for her, which quickly grew to millions of followers.
As of Friday, Rose had 12 million followers on Facebook, 2.92 million subscribers on YouTube, 426,000 followers on Instagram and 460,000 followers on TikTok. She used those platforms to document her daily life and answer questions about progeria.
Those who followed her journey shared how much she meant to them on her social media pages this week.
A GoFundMe has been set up to help raise money for funeral costs and medical expenses.