Courageous Kiwi kids open up on living with heart conditions

Squeals of laughter float through the air as around 90 children are let loose for a full week of fun and friend-making at Heart Kids Camp in January.

Their adventures include courageously tackling endless activities and the opportunity to bond over their common thread - their resilience fighting congenital heart defects.

While school camp is a rite of passage for most Kiwi kids, for many in attendance at Camp Braveheart, their medical conditions don't make it possible.  

It's nine-year-old Lleyton Barrow's first camp at Carey Park in west Auckland this year. He has long QT syndrome - a condition that can cause cardiac arrests.

It's hereditary. His mum, Claire Sword, was diagnosed when she was ten years old. Her dad, two brothers and Lleyton's little sister also have it. 

"Realistically, you don't know when you're going to have a cardiac arrest," says Claire. 

Lleyton has a portable defibrillator in a nearby backpack at all times, carried by his teacher aide while he is at school. 

"It makes your heart beat again, I'm pretty sure," explains Lleyton. 

Courageous Kiwi kids open up on living with heart conditions
Photo credit: Heart Kids.

Claire couldn't wait for her son to get to camp - a place she valued as a Heart Kid herself where a medical team is on standby for any issues that may pop up. 

Despite a few nerves ahead of arriving, she says meeting other children living in similar situations was "massive". 

Lleyton's friend from school in Christchurch, Chloe, has also joined the 2020 camp. Chloe was born with a hole in her heart.

"It's very lucky because I may have not made it," Chloe says. 

She tells Newshub she loves the chance to go to camp. 

Every week, 12 babies are born with a congenital heart defect (CHD) in New Zealand. It is the most common birth defect and also the number one cause of death in infants and babies. 

While some children can go on to live a normal life, many face a lifetime of surgeries and daily medication and in some cases, an uncertain future. 

Courageous Kiwi kids open up on living with heart conditions
Photo credit: Heart Kids.

More than 550 major heart surgeries are performed on children or babies, sometimes in their first few hours of life. It's a reality which Picton local Joseph is all too familiar with. 

The 13-year-old has a combination of heart defects, requiring open-heart surgery twice. He will need another when he is 16. 

"A lot of people at school ask me about my scars, and I say 'this one's from a shark attack' and make up other stories, then I just say 'it's a long story'," he says with a grin. 

Full of energy with an easy-going nature, Joseph says one of his favourite hobbies is singing. He often goes busking and recently pulled in $100. 

He has a lot of cool friends who treat him the same way as everyone else. 

"That's how I want to be treated, that's how my parents treat me, and I completely respect that. They don't even know it," he said. 

"If you have a heart condition normally some of us just have a bit of a scar, but that's normal, they're not that special just because of one scar." 

Courageous Kiwi kids open up on living with heart conditions
Photo credit: Heart Kids.

Lleyton's mum Claire says there are still families who are going through tough times with a child living with a heart condition, who don't know that Heart Kids is there for them. 

"It's sad because Heart Kids provide fantastic support while you're in hospital and when you're at home in the community, as well as offering things like camp and group activities to try and get these kids together to meet other kids." 

Annually over 50 heart kids will lose their battle and become heart angels.  

With no government funding for the services it provides, Heart Kids is reliant on the generosity of the New Zealand public.  

Claire wants to see the camp carry on to bring the Heart Kids together. 

"I think camp gives the kids a massive boost and I hope they continue to provide it in the future."