The mother of a Christchurch teenager awaiting a life-saving heart transplant says she is scared of losing her son to the same condition that killed her two brothers.
Shade Beardsell, 18, has hypertrophic cardiomyopathy, which causes the heart to grow thicker than normal.
At about 3cm thick and growing bigger each week, the heart is almost almost three times the size of what it should be.
His mother, Jess Campbell, said it should be about 1.2cm thick.
"He'll pass away (without a new heart)," she said.
"We already all know that. Sometimes you get that sick and you're so sick you can't have one (a transplant)."
The family also had Wolff-Parkinson-White syndrome, in which an additional electrical pathway between the heart's upper and lower chambers caused the heart to beat rapidly.
To ensure Beardsell was in the best position to have the transplant, he needed to stay as healthy as possible, including remaining at an optimal weight.
"I'm trying to eat healthy at the moment. I'm going to school sometimes," he said.
The Hillmorton High School student explained his energy levels were waning.
"I can't do much, eh. Sometimes I just sleep at home."
A Givealittle page had been set up to help cover the family's travel and accommodation costs.
"It could be 24 hours, it could be a week, it could six months. You just don't know," Campbell said.
"That's the hard part. When he goes on the list, everything will kind of be on hold."
A history of heart problems had been something the family had grappled with over the years.
Campbell learned she had hypertrophic cardiomyopathy when she was pregnant with her oldest child.
In 2010, her older brother Josh, 23, was admitted to hospital where he was put into intensive care.
"They said there's nothing that we can do. So they ended up turning off his life support," Campbell said.
"By the time that they did all this stuff and tried to give him other things, and the process of it, it just made him that sick."
Campbell explained her 25-year-old brother became too unwell to be assessed for a heart transplant.
He spent several weeks in hospital before passing away.
"One morning they went in and said to him that he wasn't a candidate for a new heart. And he died then and there."
With her son now facing a similar battle, Campbell said she had no time to focus on her own health, nor process the grief of losing two of her brothers so young.
"I'm scared, I'm sad," she said.
"I'm not sad because of what's going on, I'm sad because I thought that would have a bit more time. Why did things have to come so quick?
"But I have to be strong. I won't give up. I'll keep going forward no matter what happens."
Organ Donation New Zealand facilitates donations around the country, working closely with health providers.
Wait-lists for organ transplants remained in the hundreds.
Team lead Sue Garland said the demand for transplants exceeded the number of donors.
"Those people who are waiting on those transplant lists... they will potentially not survive if they don't get an organ. It's hugely important."
Garland said there were myths about organ donations that acted as a potential barriers.
"People often think they're too sick or too old to be an organ donor. Somebody who may have problems with their lung, may have a very healthy liver or kidney."
Another misconception was a belief that family members override a donor's wishes, which was rarely seen, she said.
Last year, 70 people donated organs following their death, allowing 213 people to have life-saving transplants.
The number of heart transplants had ticked up in recent years.
In 2024, 19 heart transplants were carried out, three more than the previous year.
