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It's time to change the future for all children with dementia
"Sharing our story is no easy endeavour. We live through the worst of times over and over again. But I walked into Thomas's empty room the other day, and I knew in my heart that he wanted me to make a difference.
So here I am, sharing Thomas's story, our story, our knowledge of childhood dementia: to make a difference for families now, and to change the future for all children with dementia."
- Rose, Thomas's mum
After Thomas was diagnosed, my husband Brett, Thomas’s father, and I began a two-decade-long fight to care for our boy in the best way we knew how. Because no one else knew how to.
At that point, Thomas still spoke. But slowly he realised he couldn't really communicate with other children, so at the age of 5 or 6, he just stopped talking. We didn't know then that we would never hear him speak again. We didn't know so much about what was still to come.
There was so much fear. We thought others would show us the way. But no one seemed to know what needed to be done.
His diagnosis, Mucopolysaccharidosis, meant we were told only that he would deteriorate slowly until his death, probably by pneumonia, probably in his mid-twenties. We were told we would need to be carers. We had no idea what that meant. Having to physically care for a dying child, and then a young man with significant disabilities, in your own home, is heartbreakingly difficult. Thomas suffered so much. The last few years were diabolical.
We learned how to love him in the way he needed. We learned to research, make appointments, look for support wherever it existed. We learned that we had to leave our jobs, it wasn’t sustainable to work normal hours and care for Thomas.
One of my biggest fears was that my trio of boys would separate — that Thomas would be left out, left behind. But Thomas created a strength in the five of us, a bond I still can’t fully describe.
Thomas’s brothers, Samuel and Jack, would look after Thomas on weekends to give Brett and me a break. They would shower him, hold him. But mostly they just hung out with him. I’d walk into the granny flat and find all three boys together, listening to ridiculously loud music. They’d dress him up, he liked to dress well, and take him down to the esplanade. They’d watch movies together. My boys knew exactly what he needed.
We know now that childhood dementia is far more common than most people expect: this year it will take the same number of lives here in Australia as childhood cancer.
We know that Childhood Dementia Initiative is working to raise awareness with government, identifying how all of Australia can make sure no child is left behind and no family is isolated. In fact, in 2024, the year Thomas died, we stood in Parliament House alongside Childhood Dementia Initiative to champion greater investment in childhood dementia support and research.
We know that Childhood Dementia Initiative has driven real change over the last 5 years: bringing together researchers, healthcare and disability support professionals, families, and supporters from across Australia and the world to bring the language of childhood dementia, the needs of children with dementia and their families, and the solutions that can drive sustainable impact to the global stage.
And we know there is so much more to be done.
Your donation today helps make sure the next family diagnosed doesn’t face this alone. Please give to Childhood Dementia Initiative before 30 June.
