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The Untold Stories Of New Zealand’s Bravest Hearts

Rebecca and Anthony Wilkinson’s younger son, Ali, is one of the 12 babies born every week in New Zealand with a heart defect. A congenital heart defect (CHD) is the most common birth defect, affecting 1 in every 100 births. There is no prevention nor cure for a CHD. It is also the #1 cause of death in babies and newborns.

Each week 12 New Zealand babies are born with a heart defect

Rebecca describes the first meeting with her local Heart Kids’ family support worker as being “as if a warm hug walked into our home, cleared the brain fog and helped us pave the way forward.”

Heart Kids is the only not-for-profit organisation dedicated to supporting New Zealand’s heart children throughout life.

June 7-13 marks Heart Kids’ Awareness Week, and the organisation, which receives no government funding, is asking New Zealanders for donations to help it continue its dedicated and much needed support for these special Kiwi kids and their families.

Volunteers will be out shaking collection buckets on street corners around the country on Friday 11 and Saturday 12 June, and will be shaking virtual buckets online throughout the entire month of June at

Initially Ali’s breathing difficulties were brushed off and Rebecca and Anthony were almost at the end of their tether when Heart Kids came into their lives.

Unlike many heart kids who are frequently diagnosed during antenatal screening, Ali’s diagnosis was finally made after two years of repeated doctor’s appointments and hospital visits. Ali has a Vascular Ring on the basis of a Double Aortic Arch (DAA) which means his aorta had essentially created a complete ring that strangled his oesophagus and trachea causing him issues around swallowing and breathing.

Rebecca says that Heart Kids changed their entire perspective around their little boy’s heart journey.

“Our family support worker’s wonderful communication around what we could expect, how to access assistance while we were far away from home at Starship Hospital and the overall support have been instrumental in getting our family through the toughest thing we have ever experienced.

“From the initial home visits and telephone calls to the family fun days and ongoing post-surgery check ins and genuine empathetic care, Heart Kids has reduced our stress, anxiety and the burden of the unknown. For that we will be eternally grateful,” says Rebecca.

Heart Kids also provided advice on how to support Ali, and his three-year-old brother Asher, through the surgery process. Rebecca and Anthony wrote a story to help them feel engaged and understand the situation, which also gave the boys a platform to ask all the ‘why’ questions they had.

Ali underwent a thoracotomy at Starship Hospital on 4 May this year.

“The change in him is just incredible. He is only weeks post-surgery, but the next health project for our family will be us all getting fit enough to keep up with Ali!” says Rebecca.

Heart Kids chief executive, Mark Longbottom, says that many heart kids will continue to face day-to-day challenges associated with their heart condition for the rest of their lives.

“That’s what we’re here for. Often these children will need multiple surgeries and have ongoing health issues. We provide intensive wrap-around support for heart families for as long as they want and need it,” says Mark. “Some of our heart kids are in their 30s now, and we continue to support them and their families.”

Every year, more than 600 major heart surgeries are performed on children or babies, sometimes in their first few hours of life.

Heart Kids has over 10,000 members and is growing at 15 per cent each year. It provides heart children and their families with practical and emotional support such as information, education, training, counselling, specialist equipment, leadership development for heart youth and adults, specialised camps for heart kids, an opportunity to connect with other families or a hot meal for hospital-bound families.

You can donate to Heart Kids at and learn more about our Brave Hearts on the website:

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