TikTok star dead at 19 from rare disease

A South African teenager has died after being diagnosed with a rare condition that caused her to age eight years for every year she was alive.

South African TikTok star Beandri Booysen has died after a courageous battle with progeria, a rare disorder that caused her to age eight years for every one year of her life. She was 19 years old.

The content creator’s mother Bea Booysen confirmed her passing in a Facebook group dedicated to her daughter, New York Post reported.

“It is with deep sadness that we announce the passing of Beandri Booysen, one of South Africa’s most beloved and inspirational young women,” the bereaved parent wrote.

“Beandri was not only known for her vibrant personality and infectious laugh but also as the last surviving individual in South Africa living with the rare genetic condition progeria.

Beandri Booysen died at 19. Picture: Beandri Our Inspiration/Facebook

“She became a symbol of awareness for progeria and other special needs children using her unique spirit to inspire thousands of people worldwide. She never stopped fighting.”

Several months before her passing, the teen — who weighed just 11.8kg — had undergone a successful open heart surgery and was looking forward to spending the holidays with her parents.

Before she died, Beandri had amassed over 269,200 followers on TikTok, where she frequently shared uplifting videos. Some of her more popular clips showed her lip-synching along to various pop hits while sporting a blonde wig.

Hutchinson-Gilford progeria syndrome is a genetic condition characterised by rapid, dramatic ageing and osteoporosis, which makes bones brittle and prone to breaking.

Sufferers don’t gain weight at the expected rate and also develop a shrunk visage with prominent eyes, a thin nose with a beaked tip, and alopecia.

She had a rare condition that meant she aged eight years for every year she was alive. Picture: Beandri Our Inspiration/Facebook

Progeria — which affects one in four million babies — is incurable with most deaths in childhood occurring due to heart attacks or stroke.

Beandri was one of just 200 progeria sufferers in the world and the last person to die in the Rainbow Nation from the condition.

Despite her brief time on this planet, the courageous South African strove to live life to the fullest and went to school like an ordinary child.

“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,” Beandri said in an interview earlier this year. “This made me stronger and the person I am today.”

Many were saddened by the news. Picture: Beandri Our Inspiration/Facebook

By making it 19, Beandri had defied the odds considering that most progeria sufferers aren’t expected to make it past 14.

She hoped to use her large TikTok presence to try and “inspire and motivate” followers and “keep them positive every single day.”

“My goal is to raise awareness about other special needs individuals and show that everyone is different and unique in their own way and to give strength if I can,” said Beandri, who has three brothers Jaco, 23, Herman, 21, and Ruben, 14.

She was notably friends with fellow progeria sufferer Ontlametse Phalatse who passed away last year from the defect at 18 and was the only black sufferer in South Africa.

Before she died, the courageous youngster had dreamt of marrying by the time she was 25, having twins and working as a teacher.

Her mother said that a memorial service will be held to commemorate Beandri’s short but impressive, inspirational life.

This story originally appeared on the New York Post and reproduced with permission

Originally published as TikTok star dead at 19 from rare disease