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Legislative Council - Fifty-Fifth Parliament, First Session (55-1)
2024-08-28 Daily Xml
Contents
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Motions

Childhood Dementia

The Hon. S.L. GAME (22:22): I move:

That this council—

1. Acknowledges the chronic, life-limiting condition of childhood dementia, a genetic disorder that progressively robs children of their ability to write, read, talk, walk, and play, ultimately leading to the loss of life at a tragically young age;

2. Recognises the significant hardship faced by families with children suffering from childhood dementia, which can affect multiple children in the same family;

3. Emphasises the urgency of finding a cure, as every year, around 50,000 infants worldwide are born with conditions that lead to childhood dementia, and currently, there is no effective treatment, nor cure;

4. Highlights the concerning disparity in the funding of research into childhood dementia, which currently receives just one-fifth of the funding designated for childhood cancer, despite claiming the lives of a comparable number of children annually;

5. Acknowledges a $250,000 research grant secured by the office of the Hon. Sarah Game from the South Australian government, matched by the Little Heroes Foundation, to provide a total of $500,000 to the childhood dementia researchers at Flinders University, and that this funding represents a critical step towards hope and progress;

6. Calls upon the state government to continue its efforts to bridge this gap in funding by committing further financial support to childhood dementia research, thereby offering hope to over 2,300 children living with childhood dementia in Australia; and

7. Urges all members of this council and the wider public to join in supporting efforts to increase funding and awareness for childhood dementia research, so that no child has to face a future without hope.

I rise today to move this motion, which acknowledges the devastating impact of childhood dementia, a genetic disorder that robs our children of the very essence of life, and calls for adequate funding to support research. Although relatively little is known about childhood dementia, it is a terrible illness that gradually impairs a child's capacity for writing, reading, speaking, walking, and playing, eventually ending in their premature death. Imagine watching a child gradually lose the skills that they had once mastered—a heart-wrenching process that no family should have to endure.

Children with dementia experience memory loss, confusion, trouble concentrating, learning and communicating, personality changes, severely disturbed sleep, behavioural issues such as hyperactivity, and emotional issues like anxiety and fear. Further, 50 per cent of children with dementia will die by just the age of 10. It is important to recognise the profound hardship that families face when their child or children are diagnosed with this condition. For these families, the diagnosis is not just a medical term; it is a life sentence that affects every aspect of their lives.

Every year, around 50,000 infants worldwide are born with conditions that will lead to childhood dementia. Despite this, there is no effective treatment, no cure, and only a desperate hope that research will one day change this grim reality. This urgency to find a cure is not just a scientific challenge, it is a moral imperative, yet childhood dementia remains grossly underfunded. While childhood cancer, a similarly devastating condition, receives significant financial support, childhood dementia receives only a fifth of that funding, despite claiming just as many lives each year. This disparity in funding is unacceptable and it is time to step up and bridge the gap.

Today, I am proud to highlight the quarter of a million dollars research grant our office secured from the South Australian Labor government, which has been matched by the Little Heroes Foundation, resulting in a total of $500,000 dedicated to the researchers at Flinders University. This hard-won funding represents a critical step towards hope and progress but it is only the beginning.

I am also pleased to inform the council of my participation in the Detained for Dementia initiative. Sponsored by the Little Heroes Foundation, this event takes place tonight and will highlight the struggles faced by children living with childhood dementia. So I stand and encourage donations for this significant event. Meanwhile, I call upon the state government to continue its effort to support this vital research. With over 2,300 children in Australia currently living with childhood dementia, we cannot afford to be complacent.

I urge all members of this council to support this motion to increase funding and awareness for childhood dementia research so that no child has to face a future without hope. I commend this motion to the house.

Debate adjourned on motion of Hon. I.K. Hunter.

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