Progeria girl’s big dream
Progeria sufferer Beandri’s one big goal is to live to the age of 29
SHE loves the colour pink, dressing up, pop music and chocolate milkshakes – just like most other fun-loving 11-yearold girls. Yet unlike other kids her age she has a rather unusual wish: all she wants is to live to the age of 29. But at this stage that dream seems unattainable: people with Beandri Booysen’s condition have a life expectancy of just 14.
The tween from Pretoria tugged at the nation’s heartstrings when she was pictured sobbing inconsolably on mom Bea’s lap at the funeral of her friend, Ontlametse Phalatse, who lost her battle against progeria in April at the age of 18.
Beandri is now believed to be the only person living with the premature ageing disease in South Africa.
The little girl ages eight times faster than other children and she’s clearly fragile. Her skin is as thin as parchment, she weighs just 12 kg and wears clothes meant for five- to six-year-olds.
But the Grade 6 learner is in fine spirits when we visit her at Laerskool Pierneef, where she’s decorating cupcakes for the school fair. She’s finally emerging from the funk she sank into after Ontlametse’s passing.
She spoke about little else for weeks, her friends Jaydene de Vaal (11) and Chanté Spies (12) tell us. “But we don’t talk about that any more,” Beandri pipes up. It’s time to move on and concentrate on the future – not the past.
BEANDRI was in Grade 1 the last time we visited her shortly after the right side of her body became paralysed following a stroke ( YOU, 27 September 2012). But her
daughter looked on the bright side, Bea (46) says. Beandri became determined to learn to write with her left hand – and today she’s a competent left-hander.
Bea does administrative work from home to be there for her daughter while Beandri’s dad, Pieter (46), has a business.
The little girl’s fighting spirit and zest for life has made her a favourite among teachers and pupils at her school. “Beandri always sorts out everyone’s problems,” Chanté says as the girls ice the cakes. “She’s like the school’s peacemaker.”
But she’s been through a lot. After her first stroke doctors found the veins leading to her brain were too thin to open with stents to prevent further strokes. A year later she suffered a second less severe stroke and then a third in 2014 in the classroom of her Grade 3 teacher, Theunette Venter.
According to Theunette, Beandri said she wasn’t feeling well that day. “The next moment she was staring aimlessly ahead and displaying obvious signs of distress.”
Theunette, well-informed about Beandri’s condition, picked her up and ran to the office of principal Frik Greyling, who rushed her to hospital.
Everyone was thrilled when she was well enough to return to the classroom. She has a special place in the school, Frik says, and points to Beandri’s tiny blue and yellow school tracksuit top. “The little person who fits into this has a huge personality.”
Beandri’s schoolmates accept her the way she is and she feels comfortable going to school without a wig.
Licking icing off her finger, Chanté recalls her first meeting with her friend. Beandri saw Chanté standing by herself, took her hand and “we started being friends”.
“When someone doesn’t have a friend I play with them,” Beandri explains. “She’s very cool,” Jaydene says. During breaks Beandri and her friends meet at “their tree” next to the rugby field and chat about everything under the sun and everyone at school – the boys too, they say.
Then Beandri breaks her own rule and brings up the subject of Ontlametse. They were introduced in January by Dr Engela Honey, who works at the genetics department at the University of Pretoria and diagnosed them both with the condition. The girls drank coffee, chatted and swopped phone numbers – and that was all it took for them to become firm friends.
But Ontlametse developed breathing trouble in April and eventually her lungs gave in.
Shortly after her death Beandri, her parents and Ontlametse’s mother, Bellon, spent the Mother’s Day weekend together at Graskop in Mpumalanga.
Ontlametse was supposed to be there too – the weekend had been planned a month before she passed away.
It hurts to talk about her friend, Beandri says. They used to WhatsApp a lot and she misses their chats and visits. “I don’t speak about it much because it makes me cry,” she says.
“And it’s not nice to cry.”
SHE wants to be married by the time she’s 20 and would like to have twins. “Or two daughters or maybe a daughter and a son,” she adds. “But two boys would be too much.” Beandri loves children and would like to be a teacher one day – and buy her dream car, a Mini Cooper, with her first salary.
But right now she’d like to take her two best friends to a music festival. “And I also want to go to the beach with them,” she adds.
Yet for all her optimism and dreams there’s an awareness about the implications of her condition.
If she does live to the age of 29 she hopes to have achieved as much as possible.
“And she wants to be cremated when she dies,” Bea says.
Right now though, it’s time to knock off from cupcake duty and head out to play.
“Guys, walk slowly please,” Beandri says as her friends lead her down the school steps.
And the loyal pair do as they’re told. S