STILL SMILING DESPITE OUR STRUGGLES

Three members of the Olivier family suffer serious health problems – but they’re determined to lead a normal life

- FRANCO HAVENGA

THERE are pills of all sizes and colors, capsules, vitamins, painkillers, nasal sprays and inhalers – in fact, there’s so much medication in the room it looks as if Chantelle Oli vier is running her own pharmacy.

It’s hard to get your head around it, but all these drugs are necessary to keep the Johannesburg mom and her daughters, Danielle (14) and Danika (12), on their feet. They all have a version of a rare immune disorder with the tongue-twister name immune dysregulation polyendocrinopathy enteropathy X-linked (or Ipex-Like) syndrome. And if that wasn’t bad enough, they also all suffer from cystic fibrosis.

Ipex-Like syndrome causes them to have low resistance to infection and illness because their bodies don’t produce enough antibodies. And cystic fibrosis affects several organs – especially the lungs and pancreas – by covering them in thick, sticky mucus.

Also, the trio have developed the autoimmune illness lupus and type 1 diabetes because of their compromised immunity. The result is a life spent in and out of the hospital and being hypervigilant about infection and germs.

When we visit the family at their home in Kempton Park, Gauteng, Chantelle keeps a watchful eye on her daughters. Danielle recently had surgery to insert a steel plate in her ribcage to increase her lung capacity and keep her ribs from collapsing.

Although the teenager tries to be stoic about her condition, she concedes it’s hard. “Some days I wonder, ‘Can’t it just go away so I can have a normal life?’” she says.

WHEN her children were born, Chantelle (40) didn’t know the full extent of her own illnesses, although she’d been in and out of hospital as a child.