IT'S TIME
Donate today
to give kids
like Thomas
the chance to
live long,
happy lives
Share page
It's time to change the future for all children with dementia
"In the beginning, we wanted to keep it quiet.
That our little bouncy boy would one day become severely ill, and a cruel terminal illness would take him from us. Because he was still the same Thomas when he was diagnosed.
He loved his little cars, the little shiny matchbox cars. We would find them parked around the house everywhere — the new ones were always in special drawers, and the old ones in the kitchen, everywhere else.
He hadn’t visibly started changing."
- Brett, Thomas's dad
My name is Brett, and I am father to Thomas, Samuel and Jack, and husband to Rose. Our family has faced one of the greatest challenges any family can face: caring for a child with dementia, and today, I wanted to share a glimpse of our family with you.
We didn’t know much about Mucopolysaccharidosis, also known as Sanfilippo syndrome.
As you can imagine, when those words were first told to us, they meant nothing.
Turns out, they barely meant anything to the professionals telling us either. The first time we learned about this diagnosis, the doctor had a single sheet of paper on their desk, downloaded from the internet. They told us it was fatal. They told us we would have to learn to be carers. They told us he would likely die from pneumonia. And then they sent us home.
To be carers. What does that even mean?
We didn’t know that we would have to leave our jobs. I was an executive at Qantas. Rose was a teacher. We couldn’t keep those jobs and still care for our child.
There was no NDIS back then, so we — his brothers, Rose, and I — were his carers. And we learned what that meant. The physical demands of caring for a child with severe disabilities: that was my job. The mental load of running our family, arranging every appointment, fighting for everything we possibly could: that was Rose’s job.
We would travel hours for an appointment, desperately hoping, everything crossed, for something that could help. Even a little bit. And inevitably, the first thing they would say, whether it was an allied health specialist, a doctor, anyone, was: “You probably know a lot more than I do.”
That happened even on our last trip to the emergency room.
And it’s not their fault. They mean well. But there has been little investment into research for childhood dementia conditions, because no one was calling it childhood dementia.
Until now.
We now know that Mucopolysaccharidosis is a form of childhood dementia: one of more than 100 conditions.
We now know that a baby is born every 3 days in Australia who will have childhood dementia.
We now know that Childhood Dementia Initiative is the first organisation in the world to bring all these conditions together under the umbrella of childhood dementia.
We now know that Childhood Dementia Initiative is bringing together, informing and educating health and support professionals across Australia, so that families don’t have to be the ones who ‘know more’ at the worst moments of their lives.
We know that parents across Australia are coming together to provide peer support and hard-won knowledge to families just starting this journey.
We learned the hard way. And that’s why we know we can work to make sure no other family faces what we did. To help families care for their child in the best way possible.
And we know that our family, our boys, our marriage, made it through stronger than ever.
Join us in supporting Childhood Dementia Initiative.
What I want you to know about Thomas is that, gee, he was a happy boy! He always smiled. He loved laughing. He was so easy to please. He suffered so much, and yet he had this warm, enlightening joy.
Now that you know about my Thomas and Childhood Dementia Initiative, I want to ask: what can you do? Who can you tell that childhood dementia needs action now?
Can you donate to make a difference?
Thank you for learning about our beautiful boy, Thomas.
With gratitude and hope,
Brett
