Never did she imagine that two years later, in 1999, she would act on the wishes of her 18-year-old son as he had shared that night. Then, her husband 15 years after that.

“I got the dreaded phone call to say your 18-year-old son has been killed in a road accident in Townsville. We did all the tests, there was no hope for recovery, but we knew his wishes,” Vivienne said. “My husband had a brain aneurysm. Scans showed no hope of recovery but we knew his wishes.

“Between them, they saved the lives of 10 people and the sight of two.”

Vivienne works closely with DonateLife to improve donation rates and the lives, particularly of those in Ballarat and country Victoria. When her family had the talk, there was no donor register. Vivienne was just thankful her family had talked.

“It doesn't make what happened better but I'm glad we had the conversation,” Vivienne said. “That made it easier for me. I knew what they wanted, I didn't have to second-guess.”

Vivienne could hardly imagine what it was likely for families making a decision who had not had the conversation.

Jon and Michelle Seccull stood by their three-year-old son Ethan’s bedside, holding hands, bargaining with every worldly possession to keep him alive. In that moment, they realised if they could not get their miracle then maybe they could give a miracle to other families, bargaining just like them.

“People think a three-year-old versus train would just be a mess but he wasn’t. There were still hands to hold and lips to kiss,” Jon said. “It was just a bump to the head.”

Ethan “Jimmy” Seccull died after being hit by a V/Line passenger train on October 3, 2011. He had strayed near the tracks close to his family home in Wallace. Ethan’s organs saved three lives. A foundation in his honour promotes organ and tissue donation.

When people call Jon and Michelle are heroes, Jon says they were ordinary parents who made a decision in an extraordinary event. Jon says Ethan was also not a hero in the sense that he was going to die, but they were all humbled of the impact Ethan’s donation had made in the lives of others and their loved ones. The were proud his name and story was still publicly spoken about, including people taking photos with his image around the world.

There are two ways an organ or tissue donation can occur: once a person has been declared brain dead by independent senior doctors; or, when a person has died of heart or circulatory death (life support). Ethan became the first paediatric patient to donate in the latter pathway.

Jon Seccull is now a long-serving board member of the Australian Organ and Tissue Advisory Council. Sunrise presenter David Koch played a lead role in 2009 in rallying then-Prime Minister Kevin Rudd, a heart valve transplant recipient, to create a national, coordinated approach to increase organ and tissue donation rates.

Australians are called on this week to ‘end the wait’ for 1500 on the nation’s transplant waiting list by joining the Australian Organ Donor Register. Only 19 per cent of Victorians have registered on the AODR even though almost 70 per cent of Victorians have indicated they are willing to become organ and tissue donors, according to DonateLife Victoria. More than 70 per cent say they would be willing to accept a transplant.

Australia constantly faces a donor tissue shortage, which Jon Seccull said tended to be due to myths on the process. For example, when skin is donated a person was not stripped bare. Only a very thin layer is removed, leaving a light graze. 

Jon said doctors and medical teams were incredible in their work and dignity, respect and integrity of the donor was always maintained. He said there was always choice in what to donate. But any donation could make a massive difference.

Nicole Macintosh was hooked up to oxygen 24 hours a day to keep her alive. Nicole has cystic fibrosis, a rare genetic condition in which her mucus is extra sticky. It can get stuck in her lungs, causing irreversible damage. Her lungs were worn out and failing. She spent 11 months on the transplant waiting list before undergoing a double-lung transplant. Nicole turned 40 last September, far out-living the CF life expectancy.

“I’ve got a second chance at life,” Nicole said. “I’m independent now. Before, I was relying on family and friends to take care of me. I can play with my nephews now. Before, I couldn’t even get on the floor to play with them, I just had to sit and watch.

“I can also go travelling.”

While Nicole can write an anonymous letter to her donor, she enjoys meeting donor family members, like Vivienne Linnane.

“I can say thank you to someone who’s loved ones have donated. It’s such an amazing and thoughtful gesture,” Nicole said. “In me, they get to see the other side.”

Jon Seccull said there was a lot of debate about opt-out lists in organ donation. He simply hoped organ and tissue donation became “part of the norm” in discussions for end-of-life care before a family is left to make the call in the toughest of times.

North Ballarat Roosters will wear DonateLife-themed jumpers for a family awareness match against Sandringham in the Victorian Football League at Eureka Stadium on Saturday, 1pm.