Children’s charity pleads with federal leaders to fight disease that kills four Aussie kids each week
One-year-old ‘heart kid’ Dallas stopped breathing and turned blue. Mum Joeleen believes if she hadn’t moved from regional NSW to Sydney, her youngest child would be dead.
NSW
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While other parents were handing out Easter eggs, mum Joeleen Nikoro was at her son’s bedside in the Westmead Hospital ICU after one-and-a-half-year-old Dallas Te Heke twice stopped breathing and turned blue.
Ms Nikoro believes if she and Dallas’ dad Taina Te Heke hadn’t moved from regional NSW to Sydney, their youngest child could be dead.
Dallas was diagnosed in utero with a congenital heart defect – a form of childhood-onset heart disease (CoHD) called hypoplastic right heart syndrome – and has already undergone two heart surgeries in his young life.
When he contracts the common cold, flu or other minor viruses, as he did earlier this month, the effects can be life-threatening.
“He was just coughing in his sleep, then breath-holding, and then blue,” Ms Nikoro said.
“Having a house that’s like 10 minutes away from the hospital was a blessing – knowing that I got there just in time to save him.”
Joeleen and Taina gave up everything they had to relocate to Sydney from the Riverina town of Leeton with their two eldest children, and were functionally homeless for 15 months leading up to and after Dallas’ birth.
“Our cardiologist would meet families either in Wagga Wagga or Canberra – Wagga was an hour and a half away, and Canberra was three-and-a-half hours. We were just exhausted, financially, mentally and physically,” Ms Nikoro said.
Ronald McDonald House provided a roof over their heads, while HeartKids stepped in to provide groceries, mental health support, and helped the couple apply for social housing.
“That’s what got us over the line.”
HeartKids is Australia’s only not-for-profit dedicated solely to supporting families impacted by CoHD, which costs four young lives each week, but CEO Marcus Sandmann said federal funding is running low.
Already the charity has been forced to put on hold its “Teen Camp” transition program for young adults learning how to manage their condition on their own.
Ahead of the May 3 election HeartKids is appealing to party leaders to pledge $7.5 million towards four “priority areas”, including the implementation of new national standards of care across the country.
“We were very happy to launch those standards of care in February 2024 with (Health) Minister Mark Butler,” Mr Sandmann said.
“We would be calling on the Minister to support us with the ongoing need to reach regional support services.”
It’s a small price to pay in combating a disease which costs the nation almost $2.3 billion dollars a year, he said.
Ms Nikoro urged parliamentarians to “invest in our children, our families and our future”.
“I want to ask the government to truly see families like ours not just in the hospital, but beyond,” she said.
“Our journey with Dallas has shown us how incredibly strong and brave heart kids are – but no family should have to walk this road alone or carry the financial and emotional weight on their own.
“Families need real support: affordable long-term accommodation near hospitals, transport assistance, financial support for parents who have to stop working to care their child, and above all consistent funding for HeartKids, who walk with us every step of the way.”
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Originally published as Children’s charity pleads with federal leaders to fight disease that kills four Aussie kids each week
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