Tiny gi­ant Be­an­dri Booy­sen’s big dreams

Los­ing her friend Ont­lametse ear­lier this year was dev­as­tat­ing but Be­an­dri is fo­cused on the fu­ture again – and hopes to live to 29!

DRUM - - Contents -

SHE loves the colour pink, dress­ing up, pop mu­sic and choco­late milk­shakes – just like any other fun-lov­ing 11-yearold girl. 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 lit­tle girl from Pretoria tugged at the na­tion’s heart­strings when she was pic­tured sob­bing in­con­solably on mom Bea’s lap at the fu­neral of her best friend, Ont­lametse Pha­latse, who lost her bat­tle with proge­ria in April at the age of 18.

Be­an­dri is now be­lieved to be the only per­son in South Africa liv­ing with the dis­ease that causes pre­ma­ture age­ing.

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 de­pres- sion 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 it any more,” Be­an­dri pipes up. She’s ready to fo­cus on the fu­ture.

BE­AN­DRI was in Grade 1 the last time she was vis­ited by DRUM’s sis­ter pub­li­ca­tion, YOU, shortly af­ter the right side of her body be­came paral­ysed fol­low­ing a stroke. Her daugh­ter chose to look 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 motoring 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 cup­cakes. “She’s like the school’s peace­maker.”

But she’s been through a lot. Af­ter her first stroke doc­tors found that the veins lead­ing to her brain were too thin to open with stents and 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 the 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 “let’s be friends”.

“When some­one doesn’t have a friend I play with them,” Be­an­dri ex­plains. “She’s very cool,” Jay­dene says. Dur­ing break 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, she says.

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 Ont­lametse’s death Be­an­dri, her par­ents and Ont­lametse’s mother, Bel­lon, spent the Mother’s Da y we ek e n d to­gether at Graskop in Mpumalanga.

Ont­lametse was sup­posed to be there too – the we ek­end wa s planned a month be­fore she passed away. It hurts to talk about her friend, Be­an­dri ad­mits.

They used to What­sApp a lot and she misses their chats and vis­its.

“I don’t speak about it too 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 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.

ABOVE LEFT: Be­an­dri and her two best friends, Jay­dene de Vaal (left) and Chanté Spies, with the cup­cakes they made for the school fair. LEFT: Frik Greyling, prin­ci­pal of Laer­skool Pierneef, couldn’t re­sist the choco­late treats.

TUMELO LEBURU SUP­PLIED

LEFT: Be­an­dri used to wear a wig but is now con­fi­dent enough to go without it. ABOVE: With her mom, Bea.

SUP­PLIED

ABOVE: The death of her friend Ont­lametse Pha­latse was trau­matic for Be­an­dri. They’d only met in Jan­uary but had be­come firm friends.

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