Toby lives with childhood dementia. Limited funding in Australia is leaving families without hope

Toby has childhood dementia, whereby children lose abilities like speaking, walking, hearing and sight, and can suffer from seizures. Photograph: Childhood Dementia Initiative

For Nicole the hardest part of her son Toby’s childhood dementia is its regressive nature.

“Having a child, watching them grow, watching them achieve and then watching that slowly be unpicked until there’s nothing left,” she says. “To me, that is what makes it different, watching someone stage by stage die, parts of them dying. It’s a very slow and very cruel disease.”