Heart parents Joeleen Nikoro and Taina Te Heke, faced significant challenges after their son, Dallas, was diagnosed in utero with hypoplastic right heart syndrome, a serious congenital heart defect. In pursuit of essential medical care for Dallas, they made the brave decision to move from regional New South Wales to Sydney. During this difficult journey, they found comfort and support through organisations like Ronald McDonald House and HeartKids, which provided crucial assistance with accommodation, groceries, and mental health services.
As Australia’s sole not-for-profit organisation dedicated to helping families with childhood-onset heart disease (CoHD), HeartKids is now calling on the federal government to invest $7.5 million to enhance support in our areas of service. This funding is especially critical for implementing new care standards across the nation that would benefit families like the Nikoros.
Joeleen Nikoro wholeheartedly advocates for a system where families facing the challenges of CoHD don’t have to go through it alone. She recently shared this in an interview with The Daily Telegraph: “Families need real support: affordable long-term accommodation near hospitals, transport assistance, financial support for parents who have to stop working to care for their child, and above all, consistent funding for HeartKids, who walk with us every step of the way.”
She urges the government to provide consistent funding for organisations like HeartKids and beyond. Her heartfelt appeal highlights the pressing need for systemic support to ensure that families navigating CoHD receive the help they so urgently deserve.