Beandri Booysen, a teenage girl who radiated an undeniable “hope and joy” for life despite suffering from an extremely rare aging disease, passed away just days before Christmas. She was 19 years old.
Diagnosed at seven months old with Progeria — also known as Hutchinson-Gilford progeria syndrome — Beandri was not expected to live past the age of 14, as her condition forced her to age eight times faster than the average human.
But in her nearly two decades of life, her heartwarming content on social media inspired thousands of viewers online.
A teenage girl, who suffered from a condition that caused her body to age prematurely, has sadly passed away
Image credits: Bea Booysen
On Wednesday, December 18, her mother, Bea Booysene, confirmed the news on her daughter’s Facebook page titled “In Loving Memory of Beandri Booysen.”
“It is with deep sadness that we announce the passing of Beandri Booysen, one of South Africa’s most beloved and inspirational young women,” Bea wrote in a text now translated into English.
“Beandri was not only known for her vibrant personality and infectious laugh, but was also the last surviving person in South Africa to live with Progeria.”
Image credits: Bea Booysen
She continued, “She was a voice and a symbol of awareness for Progeria and other special needs, and inspired thousands with her unique spirit. She never stopped fighting.”
While a memorial service is yet to be announced, her family has requested privacy during this “extremely difficult time.”
Beandri’s presence on social media was undeniable, as she used her platform to “raise awareness”
Image credits: Bea Booysen
From the beginning, Beandri’s motto was simple: “Be yourself. Love yourself. Believe in yourself.”
The 19-year-old was determined to show exactly that on TikTok, where she had nearly 300,000 followers, with many of her videos garnering hundreds of thousands of views.
Image credits: Bea Booysen
In an interview earlier this year, Beandri spoke about how she wished to use social media as a way to “inspire” and “motivate” her audience, sharing tips on how to adapt her positive mindset.
“I face everything that God brings into my life and I credit my family for my strength and support by raising me as a ‘normal’ child and not one to be seen as different to others,” she said.
Image credits: Bea Booysen
Her hope was to highlight “other special needs individuals and show that everyone is different and unique in their own way and to give strength” in any way she could.
According to the Daily Mail, Beandri only weighed 12kg. Despite this setback, she still attended school and had big dreams of settling down and having kids at 25 years old — before hopefully landing a job as a teacher.
Beandri was determined to spread positivity, despite her limiting disease
Image credits: Bea Booysen
The odds of having a child with progeria are 1 in 4 million, as per the Cleveland Clinic. This means only 400 young adults and children in the world currently suffer from the disease.
Symptoms start to show within a toddler’s first two years of life which include—but are not limited to—wrinkled skin, growth failure, balding, and loss of body fat.
Image credits: Bea Booysen
The average life expectancy hovers at around 14-15 years old. Some may die younger while others can live to see their second decade of life.
While there is currently no cure for progeria, researchers are actively studying various drugs in order to treat this condition.