Despite having a serious heart condition, 8-year-old Leighton Leevard is living a full life racing down drag strips and starring blockbuster movies. / Mike Scott
Every week in New Zealand 12 babies are born with a heart defect.
The number one cause of death for infants and newborns is a congenital heart defect for which there is no prevention or cure.
Every year over 600 major heart surgeries are performed on newborns and children.
The Heart Kids charity provides support for children and families around the country, from when the heart condition is diagnosed through to the teenage years and into adulthood.
Its awareness week starts on Mondaywith events around the country to raise money to help the children.
The Weekend Herald met three kids behind the statistics.
Leighton Leevard
Leighton alongside Oprah Winfrey, who also starred in the movie. Photo / Supplied
He's a champion drag racer, sat on Oprah Winfrey's knee, and acted alongside Reese Witherspoon in the Disney movie A Wrinkle in Time.
His fans would have no idea that Leighton Leevard, 8, was born with an arteriovenous malformation - a heart defect he can't quite pronounce.
Leighton, a Year 4 pupil at Manurewa Primary loved being the body double for Deric McCabe, who starred as the character Charles Wallace in the Hollywood movie, which was shot near Hawea and in Mt Cook National Park early last year.
He didn't have a speaking role but says he was stoked he got to hang out with Winfrey and Witherspoon.
"We didn't get to see much of Oprah because she was normally in her trailer but Reece was nice," said Leighton.
Leighton starred in a New World ad last year. Photo / supplied
"She was the person who would've talked to anyone."
He won the role after his mother Roberta secured him an audition.
Eagle-eyed viewers may remember Leighton from last year's New World Christmas TV advertisement in which he catches Santa working at the supermarket.
He asks "Are you the real Santa?" before taking a photo of him and loading it online, causing chaos around the world.
Leighton was a sickly baby and frequently in and out of hospitals. His lips, hands and feet were often blue. But no one knew why.
Leighton is a whizz on the race track. Photo / supplied
"We were at the hospital for the hundredth time," Leevard says.
"Heart murmurs are usually found in the front of your chest but this particular nurse listened to Leighton's heart in a different area of the back. She picked up a loud, irregular sound and asked a surgeon for his advice".
Leighton's condition was finally accidentally detected by the surgeon when he was 14 months-old.
"I was told that if the AVM hadn't been discovered Leighton would probably have dropped dead playing sport in his teens.
"It was mother's intuition. I knew something was wrong but I was told he had the flu or a virus. His body was blue, which was scary to look at. It was emotionally exhausting but I trusted my gut and never stopped questioning."
The condition is a blood vessel abnormality in which blood can flow straight from an artery to a vein without passing through the tiny capillaries in-between. The condition can occur anywhere in the body.
"If there is a lack of blood to the head the AVM can burst and you can die. Leighton's AVM was in his heart and has too much blood supply - too much blood flow. His heart was trying to push out two loads of blood and overworking," said Leevard.
At two years old Leighton had an operation where surgeons access his heart through his groin.
"I will never forget having to pin Leighton down to his bed and putting on his gas mask to put him to sleep," Leevard says.
"He was screaming with fear and I wanted to cry. He has a 6mm coil in his heart, which is like a spring lodged in his passageway. As long as it stays everything will be ok."
Leighton is a year four pupil at Manurewa Primary. Photo / Supplied
The operation was successful.
"He's considered fixed but because it's a rare defect, they don't know if anything can happen or when anything will happen."
Leighton isn't scarred by the ordeal and has been chosen to be a Heart Kids poster boy.
His mother is also grateful the charity was there for her and her son.
"Heart Kids bring so many families together. They provide support and organise activities for the kids to get together. It doesn't matter if they are sick or have heart conditions- they can still be kids".
When Leighton grows up he wants to be a drag car racer or a professional actor like his idols Taika Waititi and KJ Apa.
But for now, he's just happy playing with Lego, racing cars and going fishing.
Leighton with his mum Roberta. Photo / Mike Scott
"You can't help but fall in love with him. As soon as he walks into the room, he lights it up. He makes everyone smile and he's got the warmest heart- he cares about everyone else before himself."
Leevard says for a child who is generally reserved, he is a completely different child when he's on a movie set.
"He takes direction really well and just comes alive in front of the camera. He's a natural."
Lleyton Barrow, 7, at his school in Kaiapoi where he constantly has a defibrillator and teacher aide with him because of a serious genetic heart condition. Photo / Mike Scott
Like most 7-year-olds, Lleyton Barrow carries his lunch and books in his backpack.
But the Christchurch boy carries another bag with his defibrillator in it. It's heavy for a child to lug around, but it's his lifeline.
His 2-year-old sister, Lillian, has one too, and so does their mother, Claire Sword.
Kirsten Attewell is Lleyton's other life raft.
The teacher aid carries his defibrillator for him when he's at school and she's paid to monitor every move he makes.
In 2016, Sword was 19 weeks pregnant when she discovered her son had Tetralogy of Fallot syndrome and club foot.
Then, at 3 years old, they discovered he had Long QT syndrome.
Tetralogy of Fallot is a hole between the two pumping chambers in the heart, explains Dr Kirsten Finucane, head of the paediatric cardiac and surgical unit at Auckland Starship hospital.
"The other main component is there is a blockage of blood flow from the right ventricle to the lung.
"What we are learning is there is probably a link between the genetics and the abnormality of the heart and other things like club foot. It is in the DNA, it is in the genes and there are links from one thing to another."
Long QT is a heart rhythm disorder.
Claire Sword's family have a history of dodgy tickers.
When she was a child, geneticists discovered she carried a rare gene called Long QT Type 8.
The syndrome often goes undiagnosed or misdiagnosed as a seizure disorder such as epilepsy. When symptoms occur they can be severe and may include sudden fainting, seizures or sudden death.
Sword's father, two brothers and extended family also carry the gene - which has been passed on to Lleyton and Lillian. Their sister Stella, 5, does not have it.
Sword had her first cardiac arrest when she was 10.
"My parents heard a noise which they say was the death rattle – which is the last noise you make before you die," she said.
"Dad found me on the floor and gave me CPR".
Lleyton on the school playground. Photo / Mike Scott
Sword had a defibrillator implanted in her chest when she was 13 and her children will have theirs implanted when they are older also.
"If the defibrillator goes off I black out first and it means I've gone into cardiac arrest and so it shocks me. I have had a lot of shocks" she said.
But the mother-of-three worries a defibrillator might not be enough to save Lleyton and Lillian from dying in their sleep.
"It's a little bit scary because you wouldn't know. Realistically you'd probably wake up in the morning and they wouldn't be alive."
Lleyton is proud of the scars he got after having surgeries related to his conditions.
He can't remember the operations but his mother can't forget.
"He's been through a lot," Sword says.
"He's had two open heart operations, surgery to correct his club foot and brain surgery to get rid of the excess fluid. A valve transplant and a stent - that was before he was five."
Lleyton's mother watches her son like a hawk but panics when she gets a phone call from the school.
"I don't relax as such, if he gets a cold it could develop into something worse if the school rings, you jump up and think the worse, " she says.
In 2016, Lleyton collapsed at school. His teacher aid was with him.
"He was unconscious on the floor and didn't know what happened. Tests came back and it was Long QT- that probably triggered his heart to stop," said Attewell.
Lleyton lives with his family in Christchurch. Photo / supplied
When the Weekend Herald caught up with Lleyton at Kaiapoi North school this week, it was minus 4 degrees and he and his friends were trying to keep warm playing tag.
"He knows his limits, he knows he's not as fast as anybody else," Sword says.
"But he runs around like any other kid even though he has a wee broken heart."
When Lleyton grows up he wants to be a car racer and drive Buggatis.
But for now, he's happy doing tricks on his scooter, flips on his trampoline, and playing Minecraft on his iPad.
The family are grateful to the charity Heart Kids for providing them financial and emotional support.
"The family support worker told me it would be hard and we'd get through- that meant a lot," says Sword, now a family support worker herself.
Luna Clark
Auckland toddler Luna Clark, who turns two on Thursday, also suffers from aheart condition. Photo / supplied
Luna Clark has a broken heart.
She has had three open-heart surgeries and knocked on death's door - all before her second birthday, which she will celebrate on Thursday.Luna's chances of survival were slim - and her parents are likely to outlive her.
"We got told she had 50 per cent chance of making it to 1and [if she survived] a 60 per cent chance of making it to 5," said her mother, Olivia Swart.
"A lot of kids die."
The Auckland toddler was born with hypoplatsic left heart syndrome.
"It means half a heart, the whole left side is not there" said Swart.
Dr Kirsten Finucane, head of paediatric cardiac and surgical unit at Starship, said it means the left side isn't big enough to pump blood to the body.
"You have to rearrange the circulation for those children so the right ventricle (the right pumping chamber) is used instead. It's probably one of the most complicated and dangerous lesions for babies to have. "
"This heart condition has long-term implications. Even after [many] surgeries, circulation doesn't go back to normal. They have parts missing. It's a long-term problem and the parents will probably outlive their children."
Luna with her mum Olivia Swart. photo / supplied
Thirty-five weeks into Swart's pregnancy scans revealed abnormalities in Luna's heart. It was Hobson's choice for Swart: terminate the pregnancy or prepare for potential palliative care for Luna.
"Termination was never an option. I was too far along, she was a baby. Palliative care was our only option but we had to wait till she was born. The worst part was walking into hospital and wondering if I would walk out without a baby - that was really hard."
Swart and her partner, Donovan Clark, took a genetic test that revealed there was no history of heart disease in their families.
"There was a 15 per cent chance it could be [in our family]," said Swart.
"But we were told we literally got hit with the bad luck stick- there are no known causes, unfortunately".
Luna Louisse Frances Clark graced the world on June 7, 2016 .
"It was a peaceful birth," her mother said.
"She was 8lb 4oz and so beautiful with the chubbiest cheeks. But her hands and feet were very blue. I was told to give her as many cuddles as I could before Luna was transferred to Starship's paediatric intensive care unit."
Luna was two days old when she had open heart surgery.
Luna and her family support Heart Kids. Photo / supplied
"They told us if there was any surgery she wouldn't survive, it would be this one. You just pray with everything she comes out okay.
Swart said her daughter looked lifeless after the surgery.
Children like Luna who have the syndrome need three operations before they start school.
She's had three but will need more, including another open heart surgery called the Fontan procedure.
"She's been through more than most people in a lifetime.
If the surgery doesn't work, she will need a heart transplant, a daunting prospect for Swart.
"To me, a heart transplant is swapping one disease for another. In New Zealand there are not a lot of heart donors for kids - it's waiting for someone to die until you get saved. That's the heart-wrenching part ."
Swart, 27, and her partner Clark, 28, were living the dream in the Cayman Islands when she became pregnant.
They had good jobs and loved their carefree lifestyle. He was a boat captain taking cruises to Stingray City. She was a waitress earning "amazing tips".
The couple was planning to work on superyachts when Swart got pregnant.
"It was a shock. We were in the middle of our travels. But we discussed it and thought it was meant to be."
The couple returned to New Zealand and moved in with her parents - Jan and Steven Swart - a former Tour de France cyclist and the first whistleblower on Lance Armstrong's doping scandal.
Swart and her daughter Luna play at the local playground. Photo / Mike Scott
Luna and her Opa (Dutch for grandfather) are best mates.
"Opa is flavour of the month – he always has been. He gives her all his time she loves and adores him. You mention bike and she'll drag Opa to take her for a ride. They cycle around the streets and park - they'll be gone for hours".
Luna loves chasing cats, dancing to Taylor Swift and playing with her dolls, aka her "babies".
"She is crazy, caring and cheeky as anything. She will test you but she's also soft and gentle - she is my best friend " said Swart.
Swart feels responsible for Luna's broken heart and feels bad for what she's been through.
"When we found out what Luna had I just blamed myself, like 'What did I do wrong?'. I carried her. It's a mental thing - like my body failed her".
Heart Kids, a charity which supports children like Luna, has been a "huge part of our lives" said Swart.
"They've been amazing. They help you connect with other families. They make us feel we are never alone."
Swart and Clark's travel plans are on hold for now.
Swart has high hopes her daughter will outlive her. Photo / Mike Scott
"Never in a billion years did I imagine our life would be like this. We were avid travellers and we'd planned to take Luna with us but we can't do that now, we can't leave the country. It's not safe for Luna. And if anything went wrong I would never forgive myself".
The couple is determined to not let Luna's heart condition define or control their lives.
"We don't let it stop us or her from living life to the fullest.
"I'd love her to be a mother one day and just keep smashing life. I would love to see her grow up. I would love to see her grow old. I would love to see her out live me."
How to Help
To support Heart Kids you can donate online at heartkids.org.nz or by texting HEART to 2427 to make a $3 donation.
The charity relies solely on donations and grants to keep services operating in hospital and in communities.
