‘I was told I wouldn’t make it, now I’m running ultra-marathons’: Kyle Collis on life with cystic fibrosis

This father-of-two was told he’d never have a family or make it to 38 years old. Now he’s training for his third ultra-marathon thanks to one big change.

When Kyle Collis was a child doctors believed he would not be alive to see his 38th birthday.

Now Mr Collis is not only preparing for his 38th birthday celebration but is about to run his third ultra-marathon.

Born with cystic fibrosis and since diagnosed with CF-related diabetes, as a child there was no treatment available.

“I grew up with a huge support of CF friends … majority of them have passed away through complications of CF,” the Wynn Vale man told The Advertiser.

“To know now that I am turning 38 still feeling like I have so much more fight to give is such a surreal feeling.”

August 25, 2024: Kyle Collis is a 38-year-old cystic fibrosis sufferer about to run his 3rd ultra-marathon in light of a new treatment becoming available on the PBS for children aged two years and above in Australia this month. Picture: Kelly Barnes

Mr Collis is running five 50km plus tracks in 2025 in light of a new treatment called Trikafta which has become available on the PBS for children aged two and above in Australia this month.

“The first race is probably one of the harder out of the five, that’s called the Five Peaks in the Adelaide Hills, which is 58kms,” he said.

Prior to this announcement families would need to spend $250,000 a year to access the treatment. It will now cost $31.60 per prescription or $7.70 with a concession card.

Growing up Mr Collis would be admitted into hospital for two weeks four to five times a year with lung infections.

“I would get quite unwell with shortness of breath, quite a thick cough, sticky mucus,” he said.

This was Mr Collis’s life up until six years ago when he received an email offering him the chance to be apart of a clinical trial for Trikafta.

“There was a placebo so you didn’t know if you were going to get the medication but I was willing to take the risk,” he said.

“I just noticed so many improvements.

“I coughed up what felt like a lifetime of sticky gunk off my lungs. It was like my body started working again.”

Kyle is focused on fighting CF and walking his daughter’s down the aisle at their weddings. Picture: Kelly Barnes

Prior to the trial doctors told Mr Collis he would probably never have a family of his own.

“I’m very lucky that I’ve got my beautiful wife and my two beautiful daughters as well,” he said.

“Majority of CFs growing up from my time were told you wouldn’t have families, that’s just something you wouldn’t really think about.

“12 years ago me and my wife decided to try for our first child knowing at the time what my life expectancy was but it was a decision we made together.

“My eldest daughter has seen me grow up unwell to now being amazing, whereas my youngest daughter doesn’t actually understand 100 per cent what cystic fibrosis is because she hasn’t seen the sick side of me.

“She seen me running these ultra-marathons and to her that’s just normal.”

Mr Collis’ goal is to continue his fight against CF and walk his daughters down the aisle.

Cystic Fibrosis Australia chief executive Joanne Armstong said the listing of Trikafta on the PBS marks significant progress in the advancement of treatment options for children with CF and brings hope for the future but “we cannot stop here”.

“Life remains challenging for those without access to Trikafta and similar treatments,” she said.

“At Cystic Fibrosis Australia, we continuously advocate for further funding for research and clinical trials that support the advancement of treatment options, which is why we conducted this research with Monash. For these improvements to continue, we urgently need to keep fighting for every person with this debilitating disease.”

Originally published as ‘I was told I wouldn’t make it, now I’m running ultra-marathons’: Kyle Collis on life with cystic fibrosis