Hannah, the girl who loves horses and rainbows

Hannah is 13. She goes to school, loves horses, rainbows, and being outdoors. She also lives with childhood dementia. Her family have spent years learning what it means to live alongside their ‘rainbow girl’.  

Hannah started school, bright and engaged, but bit by bit she seemed to lose ground. Skills she’d already mastered became hard to do. A stutter appeared.  

“You think you’re imagining it,” Rachel says of that time. But then others around her started to notice things too. One day, Hannah’s school principal, who had watched her across several years of schooling, sat with Rachel and raised her concerns, listing every change she’d seen.  

In her mind, Rachel ticked off everything she listed, matching each one to her own concerns.  

Not long after, Hannah had her first seizures. An MRI showed brain atrophy, then genetic testing followed, confirming a diagnosis Rachel says she’d never heard of. Not until it became her daughter’s.  

Hannah was diagnosed with childhood dementia, caused by an extraordinarily rare condition called UBTF neurodegeneration. Only 17 cases have ever been recorded.  

“Hannah’s our rainbow girl,” Rachel says. “She’s got a very easy going, happy personality, which makes a lot of things much easier than they would be otherwise.”

People talk about diagnosis as a turning point, but for Rachel and her family, it brought little comfort. 

Childhood dementia is an umbrella term for more than 100 different conditions, and it is, Rachel says, every bit as common as childhood cancer. Most people have simply never heard of it.  

“It's actually as common as childhood cancer,” she says. “It’s just that no one's ever heard of it.” Research funding is reflective of that, says Rachel, explaining that childhood cancer receives three to four hundred times more than childhood dementia. 
“Eight out of ten children survive childhood cancer,” Rachel says. “No child survives childhood dementia.” 

Alongside what the disease is taking from Hannah, one of Rachel’s greatest concerns is what it’s asking of her little brother, Benjamin.  

The day Rachel and her husband received Hannah's diagnosis, they picked up their son Benjamin, then six and a half, from school and drove home. Earlier that morning, Rachel had spoken with him about the appointment that afternoon, saying it might bring difficult news.  

"When we got home," Rachel says, "he just looked at me and said, 'We're going to live the best life we can while we've got Hannah.'" 

"That's always been my philosophy too.” 

Now ten, Benjamin is fiercely protective, says Rachel. When they're out together, he sees things adults miss. Small but significant things, like a ramp in the wrong place, or a door that’s too heavy for Hannah to manage alone. “He’s always looking out for her,” Rachel says. 

As Hannah’s abilities change, Rachel says she’s noticed Benjamin changing too. The carefree boy she remembers changed the day of Hannah's diagnosis. His school performance dropped away for a time. His paediatrician called it a trauma response.  

"As much as this disease is taking away one of my children slowly," Rachel says, "I don't want it to take away the childhood and the future of my other child.” 

Distance has a way of making everything harder. The family lives 150 kilometres northwest of Wagga Wagga. Specialist appointments mean hours on the road.  

"The biggest challenge is the travel," Rachel says.  

But one constant has been Bear Cottage, the children’s hospice connected to their paediatric palliative care network.  

Rachel and her husband understood early that palliative care wasn't only about end of life. Hannah isn't receiving treatment for her condition, and she's never been hospitalised because of it.  

"Palliative care is not just about end of life care," Rachel says. "It's about quality of life care." 

Through palliative care, the family found the support they needed to keep living well.  

At Bear Cottage, Rachel and her husband can hand over the caring for a short time. Just be with their children, instead of caring for them. 

"There's no lazy Sunday mornings when you've got a sick child," she says. But for a few days over a weekend at Bear Cottage, there can be something resembling one. 

Rachel says she doesn’t spend a lot of time imagining what lies ahead. “I can't deal with too much thought into the future," she says. "I need to just live today and enjoy this moment and celebrate what we've got.”  

It's the same philosophy Benjamin arrived at, all those years ago, in the back seat of the family car. That the family will live the best life they can, together, while they’ve got Hannah.