Tragic Beandri Booysen who suffered from an extremely rare incurable disease that saw her age eight years for every one year of her short life has passed away – aged just 19.
Brave Beandri from Pretoria, South Africa, was not expected to live past the age of 14 but refused to give up an became an internet sensation with over 269,000 followers.
Just two months ago the teenager who weighed just 12 kilos underwent open heart surgery and was recovering well and was determined to see in Christmas with her parents.
She was born with the genetic mutation Hutchinson-Gilford progeria syndrome which causes fast ageing in children combined with osteoporosis which makes bones brittle and break.
Only one in 4 million babies are born with the incurable defect and Beandri was just one of 200 known sufferers in the world and the last sufferer in South Africa to die from the condition.
She had been close friends with fellow sufferer Ontlametse Phalatse who died last year from the mutation aged 18 and was the only black sufferer 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 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 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.
‘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’.
Beandri said in an interview earlier this year: ‘I’ve been living with Progeria since birth and I am used to it and I’ve 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 by raising me as a ‘normal’ child and not one to be seen as different to others.
‘This made me stronger and the person I am today. I have a large TikTok presence to try and inspire and motivate those who follow me 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 away and to give strength if I can’ she said.
She had an incredible 269,200 followers on TikTok.
Her parents Bea, 53, and Pieter, 57, had three sons before Beandri called Jaco, 23, Herman, 21, and Ruben, 14, and were devastated when their daughter was diagnosed at 7 months.
She only weighed 12kg’s despite her age and went to school like ordinary children and dreamed of marrying by the time she was 25 then have twins and a job as a teacher.
Her mother said a memorial service will be held to celebrate her short life.
The oldest age reached of full-blown Progeria was Italian Sammy Basso aged 28. Tiffany Wedekind, 45, of Ohio USA is said to the current oldest living person with the condition.
The average life expectancy is 14 years and few make it into their twenties.
