Helen Polley (Tasmania, Australian Labor Party) Share this | Link to this | Hansard source

I rise to speak about a very emotional and important event which occurred last night in this building. With my parliamentary colleague and co-convener of the Parliamentary Friends of Dementia group, Nola Marino, I hosted a very special gathering for an event in conjunction with Childhood Dementia Initiative. We heard firsthand from families about their experiences with this insidious and devastating disease. Their courage and dignity in speaking on the panel that we hosted yesterday was very powerful, very raw and very personal. It was a contribution to this discussion that I think those who were fortunate enough to witness will remember for a very long time to come.

Behind every statistic are real families with heartbreaking stories, fighting each day to give their children the best possible life in the very little time that they will have. The reality is childhood dementia causes a similar number of deaths in childhood as childhood cancers do, yet it receives only a fraction of the attention and funding. It is always very difficult to compare one disease with something that is just as equally devastating to the families and the individual. But this disparity is not just unfair; it's devastating, because, over the last decade, we have seen an amazing turnaround with childhood cancers where we have a 74 per cent survival rate, which is fantastic, and I applaud that. I applaud the doctors, the medical fraternity and the researchers. It's fantastic. But, if you have a child with childhood dementia, your loss is just as devastating no matter whether it's childhood dementia or cancer. The loss to the family and our communities is the same.

When you consider that you raise your children—you teach them to talk and you are excited when they learn to sit up, when they crawl, when they walk, when they are anticipating going to school for the very first time and kindy—but then you have to witness their rapid decline when they lose the ability to speak and eat, it is absolutely devastating. There is so much more for us to do, and that's why we held this function yesterday with Nola Marino and me. It was so that we can raise awareness, because too many people that I talk to have no understanding let alone knowledge that there is such a thing as childhood dementia.

We've raised dementia awareness in this parliament, I'm pleased to say, and I've played a very small part in that. We know how debilitating that is, but then you see and hear from parents. Last night, we had a panel, and we had some very brave parents talking about their experiences. There was one mum who was married. She and her husband had the joy of having three children. It was their youngest child, an eight-month-old, that was first diagnosed with childhood dementia—at eight months. Then it was the second, the middle child, and the eldest child—all three children from that family. Where they were once a happy family of a mum and dad and three children, they now have a mum who is completely dedicated to giving those children the best possible care, but she's doing it alone. Can I just remind people that her grief and her struggles are no different to their dad's, but she's there. To hear her talking about the challenges she has and having very few options to get support was absolutely heart wrenching. We need to do so much more. We need more money from governments for research. We need more researchers to be prepared to do research into this particular disease. But childhood dementia is quite unique.

Last night, the families affected by this disease spoke to us about the rollercoaster of emotions and the challenges and uncertainties that they experience. Their daily lives are consumed by the relentless demands of caring for their children, trying to juggle medical appointments and not really being able to navigate a very complex health system that doesn't have the complete understanding it should have of this insidious disease. That's what they're trying to do. If they're lucky, they have a partner and are still able to have a career. But it's a very exhausting process. Many are a complete loss and feel dazed and at times feel they are aren't living themselves.

I want to thank Cindy, Felicity, Nicole, Peta, Renee and Sam for speaking with us last night. It takes a lot of strength, as I know everyone in this chamber would agree, to come from outside of this place, not being a politician, and talk about something that is so personal and share your grief. From the time of diagnosis, as we know with dementia generally, it's a grieving process for their family and their loved ones. But put yourself in the position of having a six-year-old that you have loved and cherished for six years, and even before that, in anticipation of their birth, being the mother or the father, and ask yourself how that must feel. I can't even imagine what it would be like to lose a child. For those who have one child, it's devastating—and then if you're the parent of two children and then three. What was really beautiful was that they were prepared to share their story and their experience to help others so that their child has not died in vain and won't be forgotten and there will be advancements made in this area.

It was the Albanese government, through health minister Mark Butler, that, in the last budget, funded the State of childhood dementia in Australia 2024 report, which was fantastic. I know that Minister Butler will be open, as he has been, to meet with these parents and hear their stories. But we need to do more. We need to make sure that these stories are not forgotten. Each one of those parents is looking forward to the opportunity to come back to the Australian parliament to tell their story again and again until more people understand and there's more funding and more support. I am so proud of them. I thank them from my heart, because it means so much and it is so powerful. I can speak in this chamber, but when you hear a parent talking about their anguish, their loss and their love, that is so powerful.

Unfortunately, there is a child born with childhood dementia disorder in this country every three days. And half of all children with dementia die before the age of 10, and 70 per cent of them will die before they reach adulthood. As we know, they die a slow and agonising death, unfortunately without the support that they need. We should never forget these children. For the parents who told the story about their children, we should never forget Caleb, Dylan, Toby, Hudson, Austin and Holly. We heard you, and we do remember you. (Time expired)