Being pushed off a playground fort and breaking his arm at age nine – twice in one month – might just have saved Matthew Larman’s life.

The first time, abnormal liver readings had doctors worried he’d torn it but scans were clear and he went home in a cast.

The second time, his mother Kylie Larman asked doctors to check the same readings again. They were still off.

That prompted six months of investigation and eventually a biopsy.

While on holiday, Ms Larman got the call: her son was being referred to the liver transplant clinic.

Matthew was diagnosed with the rare, chronic liver disease Primary Sclerosing Cholangitis. One of its symptoms is low bone density, which makes them break easily.

“It was the universe in its weird way trying to send a message,” Kylie tells AAP.

“Otherwise, we really wouldn’t have known he had this disease until his liver failed.”

After years of hospital visits, blood tests, colonoscopies and broken bones, 16-year-old Matthew was placed on the liver transplant waitlist in January.

Social and sporty, he’s frustrated he can’t play rugby or go to the same parties as his mates but he’s grateful for the chance at a healthy life.

“You can’t really explain in words how it feels as soon as you sign that paper,” he says.

“I stayed up that night, thinking was I going to get called but you slowly just learn to live with it.”

Ms Larman is emotional thinking about the operation he faces but knows her son is ready.

“It’s not just one thing he’s had to deal with – it’s the colonoscopies, the breaks, pins in his arms, plates and screws in his legs.

“From age nine, he’s had hospital experiences that would terrify any child. He’s so brave.”

This DonateLife Week, Matthew is one of 1800 Australians on the organ transplant waitlist.

Another 14,000 are on dialysis for kidney failure, hoping for a match.

Yet while four in five Australians support donation, only one in three are registered. Families are far more likely to consent if they know their loved one’s wishes.

Matthew and Kylie want people to have the conversation and sign up.

“You could change someone’s life, change someone’s family,” she says.

“One life could make a difference to seven people’s lives.”

One life already has.

Zac Bennett, 22, went for “a poke” on his motorbike and to pick blackberries near his family’s property at Lewis Ponds, near Orange, NSW, six months ago.

A kangaroo jumped out on a dirt track and he crashed.

Zac was airlifted to Canberra Hospital but his injuries were catastrophic. Doctors told the family he wouldn’t pull through.

Through her heartbreak, Zac’s mother Marion Bennett didn’t hesitate.

“I said: ‘Righto, Zac’s got all these perfect organs … can he be an organ donor?’” she tells AAP.

The medical staff were stunned and relieved they didn’t need to ask.

Zac wasn’t registered but the family had talked about it. She knew it’s what he would’ve wanted.

“That was Zac’s opinion: ‘If I can’t use it and somebody else can, why wouldn’t you?’”

Zac’s organs helped several people: his heart, liver, kidneys and eyes were all donated.

“Looking back, the fact that a little person who hadn’t even reached one got part of his liver was phenomenal and he’d be super stoked with that,” Ms Bennett says.

“A young bloke around his age got his heart and I thought – he’s going to hit the ground running because that heart went hard.

“Zac could drink like a fish … but he’d be sitting on my shoulder saying, ‘see Mum, I told you my liver was fine’ because he was a smartarse.”

Nothing will bring her “larrikin” of a son home. She misses his hugs and the way he lit up a room but she hopes others will make the same decision in similar moments.

“He was a legend … and other people can be a legend too.”

Country music artist Seleen McAlister also knows what it’s like to wait.

She spent years on the transplant list after end-stage kidney failure brought on by complications from type 1 diabetes. When she spoke to AAP last year, she was still waiting.

Then this year, the call came. Mid-performance.

She couldn’t say anything right away.

“I don’t know how I did it. I don’t remember much about it. I just remember looking out to the distance and catching Jason’s eye and smiling at him,” she says, referring to her husband.

Ms McAlister had her transplant in June. Already she’s writing more music and she and her family are making holiday plans and laughing more freely than they have in years.

But she doesn’t take a second of it for granted.

“As they’re taking out drains and giving me high fives and telling me I’m doing so great, I’m thinking in my head there’s a family somewhere planning a funeral,” she says.

“We’re celebrating and on the flip side of that, there’s so much grief and sadness. It’s not lost on me.

“It stops me in my tracks … call it cliché or whatever but all I want to do for the rest of my life is honour that person.

“You have those quiet moments when I sit on the edge of the bed and I think: how did I get to be so lucky?”

 

Katelyn Catanzariti
(Australian Associated Press)