A Port Stephens family of brave hearts have shown their remarkable "zest for life" at the World Transplant Games in Perth.
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Three members of the Cairns family - Lucas, Luka-Angel and Jazz - competed at the week long Games, which began on Saturday, April 15.
The trio from Anna Bay have all had heart transplants.
Luka-Angel, 19, will dance at the closing ceremony on Friday, April 21.
"I couldn't dance before my heart transplant. That was something I desperately wanted to do," Luka-Angel said.
"It's pretty amazing that, through someone's gift, I'm able to do that now. I'll definitely be dedicating the dance at the Games to my donor."
She also competed in the 3km walk, 100m sprint, shot put, 50m freestyle and 50m breastroke.
Jazz, 16, had always been sporty but couldn't do sport before his transplant.
Ahead of the Games, he said he was looking forward to competing with "other people who have been through similar experiences to me". He hoped to go for gold in high jump and volleyball and "make the most of my heart and what my donor has gifted to me".
Luka-Angel and Jazz were diagnosed at age six and three respectively with a one-in-a-million heart condition called restrictive cardiomyopathy.
"That was a devastating day. We were told they would need a paediatric heart transplant, which came as an absolute shock," their mum Angela Cairns said.
They went to school, but couldn't do many activities because they had to be careful not to raise their heart rates.
"We would go to Melbourne and Westmead for monitoring," Angela said. "Every day they lived with shortness of breath and couldn't participate in average things like running around, going to parties and trampolines. They had some scary events, where we wondered if their hearts would stop beating. They were at risk of cardiac arrest."
Luka-Angel, who has written an autobiography titled The Heart of Me, was listed for a transplant in 2016.
Three months later, she got the call.
"In a big rush, we flew to Melbourne and she got her heart transplant at RCH [Royal Children's Hospital Melbourne] at age 13," Angela said. "It was a very complex transplant. Her new heart didn't work and she was put on life support."
She was resuscitated and had a pacemaker installed.
Angela said her doctors, the "beautiful donor" and "some incredible miracles" helped her survive.
"She's thriving, even with a pacemaker-supported heart," she said.
Jazz received his transplant in 2020 at age 13 "in the middle of COVID".
"That was frightening and hard," Angela said. "It was a race down to Melbourne. We had 15 minutes to leave our house. His transplant went extremely well."
His recovery, though, was tough due to Melbourne's COVID laws.
"We had to be locked away, except for an hour a day," Angela said.
She said her husband Lucas was "in quite serious decline at that point".
His dad Phil, who died in 2014, had a heart transplant 29 years ago. Lucas, 44, was diagnosed a year after his dad's transplant with a heart condition called hypertrophic cardiomyopathy.
"He was listed a few weeks after Jazz's transplant. Four and a half months later, he got his gift at St Vincent's Hospital in Sydney," Angela said.
When Lucas heard about the transplant games last year, he was "very sick from COVID". He set a goal to complete the 30km cycling race at the international event and encouraged his kids to participate, too.
Angela said she was "incredibly proud of them, their zest for life and ability to give to others, even in their own struggles".
"They are all so courageous. They have faced so much, more than anyone I know. Not just their own transplants, but their journey with each other, watching their father, brother or sister suffer as well," she said.
Despite more than 80 per cent of Australians stating they support organ donation, only 36 per cent have registered as donors. Transplant Australia wants to double the rate of registered donors.
In Australia, families are asked to consent to organ and tissue donation, even if a person has registered their decision to be a donor.
Games president Chris Thomas said one in two families of these potential donors were "declining organ donation". "For the 1800 people on Australia's transplant waiting list, that is a bitter pill to swallow," he said.
