Beandri Booysen (4) has no hair and blue veins criss-cross her head like a roadmap but her self-confidence seems unaffected.
She looks distrustfully at us, blue eyes prominent in a delicate face. Her translucent skin and thin legs make her resemble an elf – but there’s nothing wrong with her intellect.
“We’re happy Beandri isn’t disabled; we realise it could have been far worse. But the other side of that is Beandri knows exactly what’s going on. She knows she looks different,” says her mom Bea (39), who chats to us at her home in Doornpoort, Pretoria.
Beandri was diagnosed with Hutchinson-Gilford progeria syndrome (HGPS) in 2006. She knows she suffers from the same syndrome well-known Fransie Geringer died of in 1989. Cape Town artist Leon Botha also has the syndrome, which is caused by a mutation of the genes and leads to rapid ageing.
At four weeks Beandri’s stomach looked different from the stomachs of her brothers - Jaco (21), Herman (19) and Ruben (11) - at the same age so Bea suspected something was wrong but the illness was diagnosed only shortly after the girl’s first birthday.
“We were worried and it was a relief to know what it was. But it was difficult to accept her life expectancy would be so short.”
The disease brings many challenges. Because Beandri’s skin is so thin and sensitive she can’t go barefoot and bruises easily. She realises she’s ageing faster than other children and that she could die.
Because progeria sufferers have such sensitive skin their wigs are specially made and cost $2 500 (about R19 000).
“We’re trying to save for one. She would so like to have one for her birthday in November. It would make her so happy.”
Every day is a gift for her parents and they’re cherishing her while they wait for a breakthrough in medical science. Beandri’s dad, Pieter (39), sums it up, “We don’t see her betting bigger; we see her only getting older.”
Read the full article in the Drum of 27 May 2010