The tragic Beandri Booysen, who suffered from an extremely rare and incurable disease that caused her to age eight years for every year of her short life, died, aged just 19.
Brave Beandri from Pretoria, South Africa, was not expected to live past the age of 14, but he refused to give up and became an internet sensation with more than 269,000 followers.
Just two months ago the teenager who weighed just 12 kilos had open heart surgery and was recovering well and was determined to see her parents at Christmas.
He was born with the genetic mutation for Hutchinson-Gilford progeria syndrome, which causes rapid aging in children combined with osteoporosis that causes bones to become brittle and break.
Only one in 4 million babies is born with this incurable defect and Beandri was only one of 200 known sufferers in the world and the last in South Africa to die from this disease.
She had been close friends with her partner Ontlametse Phalatse, who died last year from the mutation aged 18 and was the only black person to suffer from the disease in South Africa.
Beandri’s mother, Bea, confirmed on her daughter’s Facebook page that she had lost her battle for life yesterday and thanked all her fans around the world for “loving her deeply.”
She said: ‘It is with deep sadness that we announce the passing of Beandri, one of South Africa’s most beloved and inspiring young women who always radiated hope and joy.
Beandri Booysen (pictured), who suffered from an extremely rare and incurable disease that aged her eight years for every year of her short life, died aged just 19.
Beandri was not expected to live past the age of 14, but he refused to give up and became an internet sensation with more than 269,000 followers. Her mother Bea (pictured left) confirmed on her daughter’s Facebook page that she had lost her battle for life yesterday.
Just two months ago the teenager who weighed just 12 kilos had open heart surgery and is recovering well and was determined to see her parents at Christmas.
‘Beandri was not only known for her vibrant personality and infectious laugh, but also for being the last surviving individual in South Africa to suffer from the rare genetic disease progeria.
‘She became a symbol of awareness for progeria and other children with special needs, using her unique spirit to inspire thousands of people around the world. She never stopped fighting.’
Beandri said in an interview earlier this year: ‘I have been living with progeria since I was born and I am used to it and have learned over the years to deal with all the challenges and surgery.
‘I face everything that God brings into my life and I credit my family for my strength and support in raising me as a ‘normal’ child and not someone who can be seen as different from others.
‘This made me stronger and the person I am today. I have a large presence on TikTok to try to inspire and motivate those who follow me and keep them positive every day.
“My goal is to raise awareness about other people with special needs and show that everyone is different and unique in their own way and, if I can, give strength,” he said.
He had an incredible 269,200 followers on TikTok.
Her parents, Bea, 53, and Pieter, 57, had three children before Beandri named Jaco, 23, Herman, 21, and Ruben, 14, and were devastated when their daughter was diagnosed at 7 months.
Beandri said in an interview earlier this year: “I’ve been living with progeria since I was born and I’m used to it and I’ve learned over the years to deal with all the challenges and surgery.”
Beanadri with his fellow sufferer Ontlametse Phalatse. The two were close friends before Phalatse died last year from the mutation at age 18 and was the only black person to have it in South Africa.
She only weighed 12 kg despite her age and went to school like ordinary children and dreamed of getting married when she was 25, having twins and a job as a teacher.
His mother said a memorial service will be held to celebrate his short life.
The oldest age reached by full-blown progeria was that of the Italian Sammy Basso, 28 years old. Tiffany Wedekind, 45, from Ohio, USA, is said to be the oldest living person to suffer from the condition.
The average life expectancy is 14 years and few live to be twenty.