Wednesday, 2 April 2025

HeartKids

Georgie CROZIER (Southern Metropolitan) (18:45): (1574) My adjournment matter is for the Minister for Health. HeartKids is a wonderful organisation that has been providing vital support for thousands of families affected by childhood-onset heart disease, or COHD, for over 40 years. I recently met with the CEO Marcus Sandmann and chief operating officer Jessica Keating. Around 2500 babies are born with congenital heart disease in Australia every year, with many more developing heart conditions during childhood and learning to manage COHD as teenagers and into their adulthood. For families with children with heart conditions there are many challenges to face. They are dealing with emotional, practical and financial impacts which can be overwhelming. People impacted by childhood-onset heart disease not only have an often very challenging journey with their heart health, but they are also at greater risk of neurodevelopmental impairment and disability, including developmental delay and other learning difficulties. And it does have a substantive economic burden on people impacted, especially those living in rural and regional areas.

HeartKids helps connect families with a range of services, which may include accommodation when travelling to access treatment or referrals to mental health support. There is also the HeartKids podcast From the Heart, sharing vital information and personal insights into living with COHD. For those families who experience the devastating loss of a child to cardiac disease, HeartKids is there to provide bereavement support. Funding is critical, and I understand that $100,000 for the Victorian arm of HeartKids would fund a full-time regional support resource that would be a significant benefit for Victorian families in regional and rural Victoria who are coping on their own. This should be a priority of government. This sort of funding should not even have to be debated. It is to support those in need and not disregard them – not waste and mismanage taxpayers money, as this government does, but provide that vital support that means so much to so many of these families and their children. So the action I seek is for the government to commit funding for HeartKids to continue this important advocacy for more community awareness, research and resources for families at a time when they need this vital support.