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.
This story is from the 13 February 2020 edition of YOU South Africa.
Start your 7-day Magzter GOLD free trial to access thousands of curated premium stories, and 8,500+ magazines and newspapers.
Already a subscriber ? Sign In
This story is from the 13 February 2020 edition of YOU South Africa.
Start your 7-day Magzter GOLD free trial to access thousands of curated premium stories, and 8,500+ magazines and newspapers.
Already a subscriber? Sign In
THE MICHAEL'S ANGELS
The king of pop's kids are a close-knit trio who guard their privacy fiercely
BARBIES ON THE GO!
Sending their dolls 'travelling' around the country started as way to escape everyday life during the pandemic and four years later they're still going strong
THE ROAD LESS TRAVELLED
These musician decided to pack up their lives and trek across the country - with three kids in tow!
TALES FROM THE DIRECTOR'S CHAIR
After 40 years in Tinseltown, filmmaker Ed Zwick is spilling the beans about the stars with the biggest egos in his tell-all memoir - and he doesn't regret a thing
India's national election
SOUTH Africa isn't the only country holding an election this year - America and India, among others, are also heading to the polls. Most countries hold elections every five years, and it typically takes place one day before the votes are counted.
IS YOUR BRA HARMING YOUR HEALTH?
Wearing the wrong bra size can cause more than discomfort - a poor fit can lead to bigger problems
MY STORY IS ONE OF HOPE
She was born with a rare condition that affects her muscles but it hasn't stopped Kerry from getting a degree or writing a book
DEATH FROM ABOVE
Drones, like the one used to kill seven aid workers in Gaza, are becoming common in battlefields
FINALLY I'M FREE
IT STARTED innocently enough, with a Bible study group, scripture readings and prayers in the suburbs of Centu rion.
CONJOINED IN HOLY MATRIMONY
Abby and Brittany have again sparked public interest after Abby's 2021 wedding recently made headlines