EIGHT hours straight in the surf would have been an almost impossible task for Evans Head teenager Jye Grainger six months ago.
That's because the 14 year old has cystic fibrosis (CF), a life-threatening genetic condition which affects organs such as the lungs and pancreas, causing irreversible damage.
But it's a different kettle of fish now, thanks to the addition of CF "miracle" drug Kalydeco to the Pharmaceutical Benefits Scheme.
Jye said he noticed a big change in the amount of energy he has had since being put on the drug last Christmas.
"I have a lot more energy," he said. "The other month at a Mal comp I went (in the surf) for eight hours straight."
Jye's mum Karen Grainger said her son was lucky to be well enough to go to school four days a week last year.
"Its made a huge difference," she said.
"Last year he would have around three days at school and sometimes four, but now he can go five days and surf."
Before Kalydeco was added to the Pharmaceutical Benefits Scheme, it cost $300,000 per person per year.
Jye's cousin Natayla Brunsdon will also benefit from the drug when she turns six, the minimum age for prescription.
Kalydeco is effective against the CF gene mutation G551D, which both Jye and Natayla possess. The gene is only common to 8% of CF patients - about 250 Australians.
Kalydeco means their life expectancy has increased dramatically from 37 years, with researchers expecting many to live long enough to become grandparents.
While Kalydeco provides significant relief for CF symptoms, sufferers and their families stress it is not a cure and more research still needs to be done.
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