The bold goal for 2022’s Santa Speedo Shuffle is to raise $200,000, which will mean the event has raised $1 million for Cystic Fibrosis ACT in its lifetime.

“If that’s the legacy that Andy can leave,” said Head Santa, Heidi Prowse, about her late husband, “then I think it just about sums him up.”

Co-founders of the Santa Speedo Shuffle, Heidi and Andy both grew up in Tamworth NSW but wouldn’t meet until after moving to Canberra.

“Our sisters were friends, so I knew of him. I remember my mum told me when I was a child, ‘Carla’s little brother has cystic fibrosis (CF).’ Because The Wolverines had just released 65 Roses; that was Mum’s way of explaining it to me.

“Ten years later, I walk into a party in Canberra and there he was. I got up the courage to introduce myself, and the rest is history,” said Heidi.

“He was my first boyfriend. I remember having a conversation with my mum a few weeks before we met. She said, ‘Aren’t you going to get a boyfriend?’ I wasn’t willing to settle for anything that wasn’t ‘it’. I was 24 and very sure of myself,” Heidi smiled.

“At that party, he kept ticking all these boxes. So charming, ridiculously good looking, but also, he used his superpower for good. He just made people feel so cared about.

“It was about three weeks after we officially started dating that he sat me down and said, ‘I need to tell you something, I’ve got cystic fibrosis.’

“For Andy, that was scary. He certainly felt that people had kept him at arm’s length for that reason. And I was like, ‘I don’t really have a choice in this matter honestly, I fell in love with you the second I walked in the door.’

“I literally left that party, called my mum, and said, ‘I’ve just met the man I’m going to marry.’ And she said, ‘Stop being a stalker’,” Heidi laughed.

The couple started the Shuffle in 2012.

“When he was healthy, he would go to Sydney every three months for a review by his medical team,” Heidi said.

“One day I said I’d like to come. So, we drove to Sydney, and we spent an entire day meeting a team of respiratory CF doctors, physios, social workers. Then he walked out of the hospital with this big list of things to do and a huge bag of medications to get him through to the next time we came.

“We got in the car, and I said, ‘Who helps you with all this?’ And he said, ‘Well, there’s this very small association, Cystic Fibrosis ACT where I can apply to get some financial support, but basically, I’m on my own’.”

Heidi had worked in the community sector for several years and kept her eye on quirky fundraising events.

“On that drive back from Sydney we dreamt up Santa’s Speedos Canberra.

“I had seen it run in Boston, where it snows, and I always wanted to do it but there was never the right cause. For Andy and I, we literally wanted to turn heads.

“The funny thing is, a lot of things that make CF difficult, from the outside world’s perspective, make you look really good.

“Andy, for example, had a medication that changed the pigmentation of his skin which gave him this beautiful tan. He couldn’t process food properly, so he was always perceived to be a ‘healthy’ weight.

“On the outside, everything that’s happening is making you look like a healthy young man, but it didn’t show what happens behind closed doors,” said Heidi.

“When he was healthy, he was spending two and a half hours a day on medical treatment, he was having to be meticulous with his diet, and there was no day off.  One day off could mean a hospital admission.”

On average, one Australian child is born with CF every four days; it is the most common life-shortening genetic condition in Australia. There is currently no cure.

“I called Cystic Fibrosis ACT and said, ‘I’m going to do this fun run, we want to raise $10,000’ and they laughed at me, ‘We try and do a fundraiser every year, we don’t raise very much money.’ I said, ‘I’ve got nine friends, they’re all going to raise a minimum of $500 each.’”

Over a decade, the number of Santas has risen from nine friends to 175 Santas registered so far this year and counting.

“We arrived at Glebe Park on the morning of the first Shuffle on a day like today,” said Heidi, gesturing to the frosted grass outside her home.

“We stripped down and ran from Glebe Park through Civic, rattling our little cans. The finish line was the Kingston Hotel. It was 6.5 kilometres, for 65 roses.

“Over the years, we all knew that we were running for Andy, because he’d been the most unwell. Yesterday I counted, he spent 76 weeks in hospital in five years. So, we all knew that we were running for him, but he was the kind of person who was running for everybody else.”

Today, the average life expectancy for Australians with CF is 38 years old. Andy passed away last year, on 8 October, at the age of 34.

“There’s been some incredible medications that have just become available in Australia,” said Heidi, a little under a year later. “They’re saying it could potentially increase CF life expectancy by 20 years.

“It’s bittersweet, isn’t it? It’s what we’ve been waiting for. Particularly this time of year, I keep seeing these posts of the hope we had that he would be well enough to get something like this.

“But at the same time, if we hadn’t done the Santa Run …” Heidi trailed off, then looked around the room at years of accumulated memorabilia. “People with CF can’t interact with each other because they can pass these bugs on. You miss out on that peer connection.

“The Santa run, taking place outside, has been more than a fundraiser. It’s been this opportunity to connect as a community, and to meet each other in a safe, weird way,” she smiled.

Andy passed away in his home, in the arms of Heidi and their fur baby, Monty.

“The three of us climbed into a single hospital bed and spent the last night together with him.

“He fell asleep, and the palliative care nurse said, ‘we probably don’t have much more time.’ I asked, ‘Is he going to wake up again?’ She said ‘no’. I thought I wouldn’t get to have this last conversation,” said Heidi.

“Everybody left, I was sitting in the room with just him, and he opened his eyes. I gasped and said, ‘Andy. I love you so much.’ And he took this big deep breath and he said, ‘I know’.

Her mouth tilted into a smile. “And I’ve just found out that that’s from Star Wars.

“He was a massive Star Wars fan – Emperor Strikes Back is his favourite movie of all time. He Han-Solo’d me! He always had called me princess.

“Just before he passed away, we had a big conversation about the Shuffle and he used those eyes on me and said, ‘Will you do one more?’

“Andy passed away in lockdown. I had to choose the guest list, due to the restricted amount of people. How do you make a call like that? Andy would have filled a stadium if it was up to him.

“When he passed away, all our Santas across Canberra and the world put their speedos out in tribute to him. It was a great way for people who couldn’t be at the service to come together.”

The service for the beloved member of the CF community was the only one ever held at The Boat House in Barton, exemplifying Andy and Heidi’s “drink from the crystal” life philosophy.

“You don’t know how much time you have on this earth, so don’t leave the good plates in the cupboard, eat off them every day – and lick the bowl,” said Heidi.

The 10th and final Santa Speedo Shuffle in memory of Andy will take place around Lake Burley Griffin on Sunday 31 July. The theme of this year’s Shuffle is ‘Come as you are’.

“It’s just a $40 registration fee and everyone can come. It’s not a race, just go as quick as you need to keep warm. We don’t shuffle till 10 because we wait for the fog to lift.

“Let’s celebrate this human and celebrate as a community,” said Heidi.

Visit santaspeedoshuffle.org.au to register by 25 July.

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