A girl who suffered a rare condition which saw her age rapidly by gaining eight years for every one has passed away after raising awareness through social media
A girl with an extremely rare disease which saw her age eight years for every one has passed away at just 19 years old.
Beandri Booysen, defied the odds after being given a life expectancy of just 14, but has now sadly died as confirmed in an official statement from her family. The South African had gained a following online, where she documented her journey with Hutchinson-Gilford progeria syndrome, a genetic condition which causes fast ageing in children combined with osteoporosis, which makes bones brittle and easily breakable.
Despite being just 19 on official records, her bodily age would be closer to 152, as she ages an extra eight years for one. Only one in every four million babies are born with the condition and Beandri was just one of 200 known sufferers.
Two months before her death, Beandri had undergone open heart surgery, which had gone well. She was taking time to recover and was keen to make it through December to enjoy Christmas with her family. Beandri had also been close friends with fellow sufferer Ontlametse Phalatse, who died last year from the mutation aged 18.
Beandri’s mother, Bea, confirmed on her daughter’s Facebook page that she had lost her battle for life yesterday and thanked all her 269,000 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 Arica 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”.
The social media star said in an interview earlier this year: “[Hutchinson-Gilford progeria syndrome] 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.”
Beandri is leaving behind her parents, Bea, 53, and Pieter, 57, and her three older brothers Jaco, 23, Herman, 21, and Ruben, 14. The oldest age reached by someone with the condition was Italian Sammy Basso aged 28.
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