When ‘Head Santa’ Heidi Prowse pulls on her red Speedos to shuffle around the lake, her husband won’t be far from her mind.
Andy Prowse was dying from cystic fibrosis last year during lockdown aged 34, so he made a final request to his wife.
“He used his puppy dog eyes, his dimples, and said, ‘will you do one more shuffle for me?'” Heidi explained.
This year will mark the ACT’s 10th and final Santa Speedo Shuffle.
Andy came up with the event as the ultimate winter challenge for Canberrans to “run a hot lap” and raise money for Cystic Fibrosis ACT (CFACT).
“We thought about having it at Christmas time, but that seemed too easy, and cystic fibrosis isn’t easy,” Heidi said.
“Andy and I started the Santa Shuffle back in 2012. We had been dating for about 12 months and I was desperate to do something that would mean we could grow old together.”
Cystic fibrosis primarily affects a person’s lungs and digestive system because of a malfunction in their exocrine system that’s responsible for producing saliva, sweat, tears and mucus. There’s currently no cure.
It is Australia’s most common genetic disease: on average, one baby is born with cystic fibrosis every four days.
Over the past five years, Andy spent 76 weeks in hospital and about two-and-a-half years with hospital-at-home services. But Heidi said Andy introduced her to “life drinking from the crystal”.
“It’s a different situation to most people, but every moment with him was so much more precious because we didn’t know how much time we had,” she said.
“People with cystic fibrosis, ‘resilient’ isn’t the right word for them. They conquer life in a way we can’t understand.”
Money raised from the event has been used to provide essential medical equipment, nutritional supplements and sports grants to local families with a child or adult living with cystic fibrosis.
“The first year we had the shuffle, Andy was running for everyone with cystic fibrosis because many people didn’t know he had it,” Heidi said.
“But his message this year would be: remember, we’re running for each other and for more decades.”
Bruce local Kate Daly has cystic fibrosis and has been part of the shuffle since its inception.
The 18-year-old wanted to see the largest contingent of Santas around the lake to mark Andy’s memory.
“I want to make Andy proud – to make the last one the best one and celebrate his legacy,” she said.
“This is so special to the CFACT community. We want to help everyone live longer lives.
“While it’s cold, it’s a little pain to put decades onto someone’s life.”
Canberra mum Sally-Anne Clark needs that sense of community as her eight-year-old daughter Millie goes through her cystic fibrosis journey.
Millie was diagnosed at 16 days old.
“We knew something was wrong. She was a very upset and sad little girl. But when she started enzyme therapy, she became so happy and started sleeping,” Sally-Anne said.
“She’s now a thriving eight-year-old girl. When you look at her you wouldn’t even know she has cystic fibrosis.”
One isolating and challenging aspect of the genetic disease was people with the condition could not socialise together. A number of germs and bugs could be spread between people with cystic fibrosis that were usually harmless to people who didn’t have the condition.
Therefore the social aspect of the event and CFACT provided a lifeline.
“We rely heavily on each other for emotional support, for the first hospital admission, all those life stages that come when you have a child with a genetic illness,” Sally-Anne said.
“As Millie gets older, that digital community will become much more important as well.”
Sally-Anne said the event had helped her family with costs and taught her the importance of advocating for Millie.
“I need to be her voice until she can do it. That’s the legacy Andy has left for me,” she said.
“This will be Millie’s first shuffle. She’s seen us go off and do it every year in awe, so she’s got her Santa hat ready.”
While Speedos aren’t mandatory, splashes of red are needed in order to turn heads as participants make their way around the lake. Ugly Christmas sweaters are a warmer suggestion to bring a festive feeling.
But Heidi personally loved the Speedos.
“On the outside, we’re making cystic fibrosis look sexy,” she joked.
This year’s goal is to raise $200,000, which would bring the total amount raised by the event to $1 million.
Want to be involved? Registrations close Monday, 25 July, with the event kicking off at 10 am on Sunday, 31 July, at The Jetty on Lake Burley Griffin.