Tragic Beandri Booysen, who suffered from an extremely rare, incurable disease that caused her to live eight years for every year of her short life, has died aged just 19.
Brave Beandri from Pretoria, South Africa, was not expected to live past the age of 14, but refused to give up and became an internet sensation with over 269,000 followers.
Just two months ago, the teenager, who weighed just 12 kilos, underwent open heart surgery. She recovered well and was determined to visit her parents for Christmas.
She was born with the genetic mutation Hutchinson-Gilford progeria syndrome, which causes rapid aging in children, combined with osteoporosis, which causes bones to become brittle and break.
Only one in four million babies are born with the incurable condition and Beandri was just one of 200 known sufferers in the world and the last patient in South Africa to die from the condition.
She had been close friends with fellow sufferer Ontlametse Phalatse, who died of the mutation last year at the age of 18 and was the only black patient 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 worldwide for ‘loving her dearly’.
She said: “It is with deep sadness that we announce the passing of Beandri, one of South Africa’s most loved and inspiring young women who always radiated hope and joy.
Beandri Booysen (pictured), who suffered from an extremely rare, incurable disease that left her growing eight years old for every year of her short life, has died – aged just 19
Beandri from Pretoria, South Africa, wasn’t expected to live past the age of 14, but refused to give up and became an internet sensation with more than 269,000 followers
Beandri’s mother Bea (right) confirmed on her daughter’s Facebook page that she had lost her battle for life yesterday and thanked all her fans worldwide for ‘loving her very much’
Beandri said in an interview earlier this year: ‘I have been living with Progeria since birth and I am used to it and I have learned over the years to deal with all the challenges and operations’
‘Beandri was not only known for her vibrant personality and infectious laugh, but also as the last surviving person in South Africa living with the rare genetic condition 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’ve been living with Progeria since birth and I’m used to it and I’ve learned over the years to deal with all the challenges and surgeries.
“I face whatever God brings into my life and I appreciate my family for my strength and support in raising me as a ‘normal’ child and not as someone seen as different from others.
‘This has made me stronger and the person I am today. I have a large TikTok presence 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 to give strength when I can,” she said.
She had a whopping 269,200 followers on TikTok.
Her parents Bea, 53, and Pieter, 57, had three sons before Beandri Jaco, 23, Herman, 21, and Ruben, 14, and were devastated when their daughter was diagnosed at 7 months.
Beanadri with fellow sufferer Ontlametse Phalatse. The two were close friends before Phalatse died from the mutation last year at the age of 18, becoming the only black patient in South Africa.
Just two months ago, the teenager, who weighed just 25 pounds, underwent open-heart surgery. She recovered well and was determined to see her parents at Christmas
Only one in four million babies are born with the incurable condition and Beandri was just one of 200 known sufferers in the world and the last patient in South Africa to die from the condition.
Despite her age, she weighed only 12 kg, went to school like normal children and dreamed of getting married by the time she was 25 and then having twins and a job as a teacher.
Her mother said a memorial service will be held to celebrate her short life.
The oldest reached age of the full-fledged Progeria was the Italian Sammy Basso of 28 years. Tiffany Wedekind, 45, from Ohio, US, is believed to be the current oldest living person with the condition.
The average life expectancy is fourteen years and very few live to be twenty.