‘She was just this little baby and we were banging on her chest’

“I hadn’t heard of it and didn’t understand what it meant,” he said.

“But my wife Dianne had worked as a receptionist in the medical centre for 15 years and I could tell by her reaction it wasn’t good.”

As the doctors began to explain CF – a life-threatening genetic condition that can seriously impact the lungs and digestive system – Darren could feel his heart sinking.

Then they dropped the bombshell: the life expectancy for people with the condition was 12.

Their daughter Shari would be lucky to make it to her teens.

“It was devastating. And the thing was we couldn’t see anything physically wrong with her. She was just a beautiful, bouncing, happy baby,” he said.

Heartbroken, Darren and Dianne returned home with Shari, hands full of pills and instructions from the Children’s Hospital.

And immediately began fighting for their daughter’s life.

Thirty years later, Shari Butcher (née Dean) is thriving – and fighting too.

Advances in CF research have seen the life expectancy rise to 37 and her team at Breathe Easy is doing as much as they can to see this trend continue.

And not just for her – but for the millions of other families who receive the same devastating diagnosis her parents heard 30 years ago.

“I know in my lifetime we’re probably not going to see a cure, but for me it’s about making sure the next generation of kids coming through can live their lives to the fullest,” she said.

Since 2015, Shari has raised $116,000 for CF research through Breathe Easy events – with hopes to raise much more at the next golf day coming up on Friday, March 8.

For Darren, who is organising the event, it’s no wonder it’s a cause close to his heart.

Looking back on the past 30 years, he said it’s been a rollercoaster ride since the day they first brought Shari home from the hospital.

Back in the 80s, there were limited treatment options.

“We were told to mix supplements in pureed fruit and force it down her throat and we had to give her daily physiotherapy – she was just this little baby and we were banging on her chest to clear the mucus,” he said.

“But one of the worst things I remember was when she got older, we were told to feel for her windpipe and push in to create a gag reflex which would make her cough up the sputum.

“I used to hate doing that. She’d be laying there, just this little baby and you’re pushing down on her throat and she’s looking at you as if to say, why are you doing this to me?”

From early on, a district nurse would visit to educate Shari on how to perform her own physio and take tablets so she could have increased autonomy.

“Her doctor once said to us, don’t wrap her in cotton wool but don’t forget she’s got it. So that’s how we dealt with it,” Darren said.

Meanwhile, CF treatment was gradually progressing and by the time Shari’s 12th birthday arrived, life expectancy was on the rise.

Starting high school, Shari realised she would have to decide who she’d tell about her condition and when she’d tell them.

For her husband Callan, whom she started dating when she was 15, it took about a year.

“I don’t think it was a one-hit ’this is what it is’. I learned about it over time,” he said.

And like Shari’s parents, he’s struggled to grasp how someone with so much joy and energy could also have a deadly condition hanging over her head.

“Looking at her, you just can’t imagine it,” Darren said.

“But CF is a sliding scale – on one end there are people like Shari who are hardly affected other than taking meds and physio.

“But on the other end, there are the ones who are pretty much hospitalised waiting on lung transplants. And I was always conscious that Shari’s condition could deteriorate in an instant.”

The family experienced their first major scare in March 2017 when Shari was admitted to hospital – and again in March 2018, both times for two weeks.

“The first time they told me I would be admitted to hospital, I broke down, I thought I’d failed,” she said.

“We had become so complacent because I can be so well. But every now and then it does smack me in the face. And while I don’t want to let it define me, while I am well, I need to try to keep it that way.”

These two admissions have motivated Shari and her family even more to raise funds for research.

“Looking back on the past 15 years I’ve known Shari, it’s incredible how far research has come,” Callan said.

“I can physically see the money we’ve donated over the years has come back to the machines she uses now. And it’s not just helping Shari – but the CF community as a whole.

“This is why it’s so important we keep having these fundraising days.”

The Breathe Easy Golf Day is at Rich River Golf Club Resort on Friday, March 8 from 11am.

You can register as a team of four or an individual for the ambrose event at $50 per person, including a barbecue lunch and two drinks vouchers.

The event is open to golfers of all abilities and women’s groups are encouraged.

For information, visit stickytickets.com.au/81454