Jondie-Lee Wilks pushes for new cystic fibrosis drug

JOURNEY: Cystic fibrosis sufferer Jondie-Lee Wilks pict. at home with a portrait of her family. Picture: Kieren L Tilly

JOURNEY: Cystic fibrosis sufferer Jondie-Lee Wilks pict. at home with a portrait of her family. Picture: Kieren L Tilly

When Jondie-Lee Wilks was first born, she was told she wouldn’t live a day past 20. 

Diagnosed with meconium ileus and cystic fibrosis, the Wagga mother-of-two was fed through a tube for 21 days and has continued to struggle to breathe and digest every day since. 

“They told my mum absolutely no one lived past 40 – it was a bit scary but I now view myself as a good case,” Mrs Wilks said. 

“I know there’s many people out there much worse off who can’t have kids and are onto their second or third transplant.” 

Mrs Wilks’ life was filled with never-ending treatment to live with the incurable disease, with tablet after tablet, regular exercise and at least four trips to the hospital a year. 

“You try and work as hard as you can to stay out of hospital but sometimes you can’t do anything about it, it’s very hard,” Mrs Wilks said. 

“It’s so much more difficult now that the kids are around, you get emotional worrying about them and you never worry about yourself.” 

Mrs Wilks was concerned her children would be born with the genetic disease, before genetic testing confirmed otherwise. 

Despite the result, the disease still very much affects the whole family. 

“They’re only young now but the next few years will be tough having to explain it to them,” Mrs Wilks said. 

“It’s hard when the internet is so readily available and as soon as you punch it in the worst things come up.”

With Friday’s cystic fibrosis day on the horizon, Mrs Wilks has her mind on a new cystic fibrosis drug, Orkambi. 

“From what I can tell from the trials it seems amazing, with just two tablets it’s described as basically giving you a set of new lungs,” Mrs Wilks said. 

“This drug would push a lot of people forward in life, if just one drug could minimise the cost and amount of other drugs. 

“I will push for anything that stops me having a transplant.”

Mrs Wilks said she relied on social media for support, given people with cystic fibrosis should never mix out of fear their bacteria could be harmful to each other. 

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