On Friday, September 27, and Saturday, September 28, 2024, Heart Kids NZ will bring kind-hearted ‘Heroes’ to street collection sites across Aotearoa New Zealand for their annual street appeal, ‘Heroes for Heart Kids,’ coinciding with World Heart Day on Sunday, 29 September.

This vital appeal raises awareness and much-needed funds to support children with heart conditions and their families. We encourage all Kiwis to support this important cause by donating at collection sites across the motu, online at www.heroesforheartkids.org.nz or by texting ‘HERO’ to 2427 to donate $3.

Every week, 12 families in Aotearoa NZ receive the heart-breaking news that their child has a heart condition. Unfortunately, there is no cure for childhood heart conditions, and these families face ongoing challenges.

This is where Heart Kids NZ steps in - providing lifelong practical and emotional support not only to heart kids, but to their entire whānau. Heart Kids NZ walks alongside families, offering vital care through every stage of life. Our support begins in infancy and continues throughout childhood, teenage years, and into adulthood, as heart conditions often require ongoing management.

We understand that the impact of a heart condition is not limited to the child but affects the entire family. That’s why we offer comprehensive support, providing guidance, resources, and emotional care to siblings, parents, and caregivers. Whether it is navigating hospital stays, preparing for surgeries, or managing everyday challenges, Heart Kids NZ is here to ensure no family ever faces their journey alone.

Heart Kids NZ receives no government funding and relies entirely on the generosity of donors and the public to ensure no heart family ever faces their journey alone. With your help, we can continue offering these essential support services.

A Family Battling Long QT Syndrome: Lleyton and Lilian’s Inspiring Fight Against a Rare Heart Condition

Lleyton Barrow was born in October 2010 with Tetralogy of Fallot and had his first open-heart surgery at just six weeks old. His first year was spent in and out of the hospital, undergoing multiple procedures, including a cardiac catheter procedure at eight months old to widen his narrow pulmonary arteries. Over the years, Lleyton has undergone more than five cardiac catheter procedures and, at age six, had a reveal device implanted under his skin to monitor his heart.

At just 2.5 years old, Lleyton faced his second open-heart surgery. Shortly after, he was diagnosed with Long QT Syndrome - a hereditary heart condition that affects the electrical system of the heart. This meant a lifetime of medication and carrying an automatic external defibrillator (AED) with him everywhere he goes.

Now 14 years old, Lleyton has just had another open-heart surgery, but he has not let his heart condition slow him down. A sports enthusiast, he loves cricket, basketball, and spending time with his friends. Lleyton remains focused on living life to the fullest and dreams of working in the medical field when he grows up.

Lleyton’s younger sister Lilian, now 9 years old, was also diagnosed with Long QT Syndrome and has just had a reveal device implanted. Like her brother, she takes medication and has an AED at home. Thankfully, Lilian’s condition has had minimal impact on her life, and she enjoys hockey, dancing, and attending Heart Kids NZ’s annual camps, where she has found comfort in meeting other heart kids like herself.

Lleyton and Lilian’s mum, Claire Sword, shared how Heart Kids NZ has been a lifeline for their family.

"Heart Kids NZ has provided us with support, resources, advice, and hope. I remember attending my first Heart Kids NZ event with Lleyton as a tiny baby, struggling with low oxygen levels. Seeing older heart kids running around, smiling, and living life gave us so much hope."

Claire hopes their family’s story will inspire other heart families. "Now, when I look at Lleyton and Lilian, I see the hope that inspired us and hope their journey inspires others too."

Heart Kids chief executive, David Pimblott says that with the support of generous Kiwis, the organisation can continue to provide the vital resources, care, and hope that heart kids and their whānau need.

"At Heart Kids NZ, we understand the immense challenges that heart families like Lleyton and Lilian’s face every day. Our mission is to ensure no family has to navigate this journey alone. The courage these young people show, in the face of life-threatening heart conditions like Long QT Syndrome, inspires us all."

Join the Mission

Be a hero for heart kids by supporting Heart Kids NZ's street appeal. Whether you donate in person or online, every contribution helps provide life-changing support to children like Lleyton and their families.

To Donate:

Visit: www.heroesforheartkids.org.nz

Text ‘HERO’ to 2427 to donate $3

About Heart Kids NZ

• Heart Kids NZ is the only national organisation in Aotearoa providing lifelong support to children with heart conditions. From birth through to adulthood, we offer practical, emotional, and financial support to help families navigate the challenges of living with a heart condition.
• Every year in Aotearoa NZ, over 600 major heart surgeries and procedures are performed on children or babies (sometimes in their first few hours of life). For many this will not be their last and they will continue to face the day-to-day challenges associated with their heart condition.
• Annually, approximately 50 heart children will lose their battle and become heart angels.
• Congenital heart defects are the number one cause of death for infants and newborns in Aotearoa NZ.

© Scoop Media