Thanks to a heart transplant last year, life has returned to "some kind of normality" for the cheeky three-year-old from Nelson Bay.

He is no longer tied to a 150-kilo life support machine in a Melbourne hospital.

He is back at home, free to run and jump and play with his little sister, Chloe, and his dog, Nugget.

But his family is painfully aware that their gain was someone else's loss.

"We will be eternally grateful to our donor family," Jack's mother, Victoria Kenny, said. "I don't think I could ever put it into words just how grateful we are to have this second lease on life.

"It is beyond amazing.

"He is just a normal toddler again now. And just to have those normal everyday battles with a toddler is such an amazing thing to experience after what we went through last year."

Jack was seven months old when he was diagnosed with dilated cardiomyopathy - a condition that leaves the heart's main pumping chamber enlarged and weakened. It was successfully managed by medication until a bad bout of influenza in 2018.

Jack was flown from John Hunter Children's Hospital to Sydney's Westmead, and then to the Royal Children's Hospital in Melbourne - home to the National Paediatric Heart Transplant Centre.

For 10 months, he lived within a two-metre radius of a machine that kept his blood pumping via a "Berlin heart", waiting for the phone to ring with the bittersweet news they had found a match.

The first night the family all slept under the one roof, back at home in Nelson Bay, Mrs Kenny woke early.

"I walked around and I saw Jack sleeping in his bed, Chloe was in her cot, Pat was still in bed and our dog was on the couch, and it was just this quiet, euphoric moment - we had made it home," she said.

"It was so special."

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Mrs Kenny's brother had brought their dog, Nugget - a Great Dane Bull Arab cross - back home that night.

The children were already asleep.

"Jack and Nug hadn't seen each other for the entire time we'd been away," Mrs Kenny said.

"In the middle of the night, Jack was in our bed and I heard Nug come into our room and he rested his head on the bed.

"Jack sat up and they just had this moment of silence where they stared at each other and touched noses. It was the most adorable thing I have ever seen.

"We have just been lapping up all of the special moments that we can since we got home."

Jack recently had a follow-up biopsy in Sydney to check his new heart for signs of rejection.

"We got the all clear," Mrs Kenny said.

"We were so excited; zero rejection and his heart pressure looked great. Everyone has been really stoked with his progress, and we are over the moon as well."

But this week, DonateLife Week, had been a particularly poignant time for Jack's family.

"This week a year ago we lost two of the kids we were close to in hospital within hours of each other," Mrs Kenny said.

"One of them was listed for transplant, the other one was hoping to avoid it, but it didn't work out that way.

"We have come so far - but we are also mourning the loss of our friends who didn't quite make it because the wait was a little bit too long.

"We have experienced the good and the bad of organ donation.

"We just really hope we can get the word out there so that the wait is shorter for someone else.

"It only takes a minute to register and offer a lifetime to someone who is in need.

"But it's also very important to tell your loved ones. Ultimately, they have the final say, so it's important they are aware of your wishes."

Mrs Kenny had previously told the Newcastle Herald of her hope that organ donation could become "opt out" rather than "opt in" - but on reflection, she said it was perhaps more empowering for a grieving family to make the decision themselves, rather than it be compulsory.

"Giving families the choice and final say in organ donation can give them peace of mind that they were part of the decision," she said.

"We were told by the transplant team that it also helps with the grieving process, knowing that something good came out of their unimaginable pain."

MATTHEW Brown was sitting on the lounge in the family home, talking to his mother about life, and death.

They talked about funerals, and final wishes.

They talked about organ donation.

"He told mum that he wanted to be an organ donor, not knowing that just a few weeks later we would need to know that," Matthew's sister, Michelle Brown, said.

Matthew was fatally injured in a motorbike race at Eastern Creek in February, 2017. He was 34.

His father, Russell, was watching from the stands.

"I was there on the day," Mr Brown said.

"I saw it happen."

Matthew was knocked unconscious during the race, and taken to Westmead Hospital for emergency surgery.

"Dad was down there with him, and mum and I hopped in the car to race to Sydney," Ms Brown said.

"By the time we got there he had come out of surgery and was in ICU.

"Dad was in a meeting with the doctors.

"They told him it was a fatal injury and it was just a matter of time."

Two days later, Matthew was declared brain dead.

"Because they knew he was a donor, the doctors and organ donation team had started the paperwork and the processes a little bit earlier," Ms Brown said.

"They did all the matching of all his organs to potential recipients."

Matthew's organs - his kidneys, pancreas, liver and heart - were given to five different people.

They get a letter from his heart recipient every Christmas, via DonateLife.

"We have been through a lot as a family over the past few years, but what has helped us the most is that someone else has been able to live a life, a better, healthier life, thanks to Matthew," Mr Brown said.

"The first part we got through all right.

"But after a year or so, it comes back and hits you pretty hard.

"We've had some counselling and that has helped us along. To be able to talk about him, talk about it, that's what helps you the most.

"And to talk about what he has done and how he has helped people. It does help."

The week before Matthew's death, Mr Brown was heading out for a paddle in his kayak.

He was pulling out of the driveway when Matthew called out.

"He said, 'Hold on, I want to come'," Mr Brown said.

"It was just out of the blue he decided he wanted to come.

"I put another kayak on the car and we went for a paddle together at Raymond Terrace - we hadn't done that for years."

They used to paddle together a lot - competing in 10-hour kayak races on the Hawkesbury River for six years in a row.

"Over the years we were both involved in different sports together," Mr Brown said.

"I used to race motorbikes when I was young, and he followed me into that, which was a bad move.

"But we surfed together, paddled kayaks together, raced push bikes together.

"He was in the canoe club with me, but in the last few years he was more involved in other sports."

On Sunday, Mr Brown was back in the "double boat" - paddling with a friend whose sister had died while waiting for an organ transplant.

"It was the first canoe club race after the whole COVID situation, and we arranged with the club to use the race to promote the DonateLife Awareness Week," Mr Brown said.

"I paddled with Ross Ferguson, whose sister was on a waiting list for an organ, but she passed away before she got the organ. So we both had a connection.

"We wore our DonateLife shirts and paddled in the rain and had a good day."

People can register to donate their organs by visiting register.donatelife.gov.au.