On the power of a mother to change the system

I came from a single parent household. My father was the first liver transplant patient in Australia, but he passed away. I think being around hospitals at a young age, watching the care of doctors and nurses and how the local community wrapped around my family, instilled in me a strong sense of empathy and compassion. 

My family was from a country town in Queensland, but mum moved us to Brisbane and then to the Gold Coast after dad died. Growing up I always had this perspective that there is always someone who is worse off than me. I went to a Catholic school, and I remember doing a lot of fundraising; I even contacted the Red Cross to come to our school so we could donate blood.

I was also inspired by the constant generosity of my mother. Even though she was left to raise three children on her own, she was incredibly generous. She didn't care what walk of life you came from - she treated every single person the same. And that's a motto that I still live by and have raised my children with.

For me this journey started when I had my son. My husband and I both work in the wine industry, we already had two healthy, beautiful children and were in this blissful little bubble. But in 2014, my son was born with a heart condition and the lack of continuum of care in the regional area where we lived, was completely eye opening. We were only 100 kilometres from a capital city but the disconnect was huge; not just the lack of care but also access to information.

I couldn’t believe that this could happen in this day and age. Unfortunately, our closest city wasn’t equipped to support my son, so we had to get on a plane, displace our other young children and go to Melbourne for a lifesaving surgery. I remember walking out of that billion dollar hospital thinking, “what's going on here?” After that experience, I couldn’t let it go. Although I needed to concentrate on my son's health and being a mum to my other kids, while also keeping a foot in my career, I started my advocacy work and I’ve been doing it ever since.

I see myself as an advocate for better health outcomes and to help improve health equity. Over the past few years, I’ve managed to raise about $130,000 for HeartKids, off my own bat. I didn’t ask for their support with the fundraising, because I just wanted to hand them a cheque. But from there I was invited to join the board, and I volunteered a lot of time helping the organisation with their strategy around fundraising, because originally a lot of the fundraising was restricted to the geographic areas where the funds were raised. I knew that needed to change.

I’ve also contributed as a consumer advocate to the state’s surgical guidelines, leaning into my lived experience. As a parent, this experience is very different when you're from a regional or rural area. I didn’t want people picking up a pamphlet thinking that they were going to automatically get the best surgeon to operate on their child, because that’s not going to happen where they live. They will need to be transferred, and they’re probably going to have to advocate for what that transfer looks like.

I’ve recently contributed my lived experience to a piece of work around the developmental delay that we're seeing in children with Childhood-Onset Heart Disease COHD, and it’s something I've been advocating for a while because I could see that my son wasn't achieving and reaching the same milestones as other kids. When I'd have the conversations with other parents, they were seeing the same thing but were too afraid to speak. I was happy to go out on a limb and say that this is a lifelong journey and the hospitals are now behind us and there’s going to be a new clinical pathway for children who are born with COHD in Australia.

That we can't work in silos for movements to happen; it has to be collective. You need all the stakeholders pieced together. I know that sounds straightforward, but often the clinical side sits at one end, the advocacy at the other and then the funding and family pieces sit somewhere in the middle.

It also has to be transparent. Obviously, I have lived experience but even ten years on, I can see that we're not telling the whole story and we're not sharing these stories with transparency and conviction. In my conversations with people, I always want to talk about really what's going on. It's lovely that we advocate with government and that we can be there by the family’s side during open heart surgery, but what about the fact that the marriage is starting to crumble? What about financial crisis because mum or the main caregiver can't go back to work?

From the day I gave birth to Frank, we’ve been on the back foot financially. And the reality is that this is a grieving journey - you grieve the child that wasn’t born healthy, and you grieve every time your child faces adversity or is excluded. If someone's willing to share how bloody hard and ugly this is, it’s up to us to share it for them because that's the piece that's going to connect. That's what might make governments stand up and philanthropists decide to support through funding. I'm incredibly grateful to be in this position.

I want philanthropy to start at a grassroots level, like teaching philanthropy in schools.

And I think volunteering should be a mandatory part of the education process.  What if you couldn’t finish high school without genuinely volunteering a certain number of hours? Basically, it’s about teaching our kids how to be good citizens.

We're very fortunate to live in the country we do, but I feel like we need to level up. We know there's a percentage of people who are incredibly wealthy and a percentage of people who are in positions of power. And I think we need all need to start walking the talk. Whether you’re a politician or a hospital CEO, the question at the forefront of every decision needs to be, is this going to make someone else’s journey better? Is this going to empower someone’s life?  Is, is everyone being catered for? We’ve embraced acknowledging our country, now let's acknowledge our people too.