Channel 7 Spotlight childhood dementia story

This Channel 7 Spotlight special aired on Sunday 13 September 2026. Hosted by Childhood Dementia Initiative ambassador, Michael Usher, it follows two families living with Sanfilippo syndrome — a childhood dementia condition. At its centre is Tilly, who is proof that childhood dementia can be prevented when a child is diagnosed and treated early enough. The special also features Childhood Dementia Initiative CEO Megan Maack, paediatric neurologist Dr Nick Smith from the Women's and Children's Hospital in Adelaide, and Professor Matthew Kiernan, CEO of Neuroscience Research Australia.

At its heart is one message: the science is here. What has to catch up now are the people, processes and policies that decide whether a child gets the right care at the right time. "Red tape" should never stop children receiving life-saving treatment.

Tilly's treatment wouldn't have been possible without more than 20 years of hard work by families and patient organisations who funded the research and pushed it forward. It shouldn't have to be like this. We need systems that can develop and deliver these transformative treatments to every child who needs them, rapidly and equitably.

Childhood Dementia Initiative warmly thanks Kate, Lachlan and Tilly, and Megan's family including Isla and Jude, for sharing their stories with such honesty and courage.

The story has also been shared as a written feature for 7NEWS, which traces Tilly's diagnosis, the trial that changed her path, and why this treatment is still not reaching other children who need it.

Tilly shows what's possible. Most children still don't get that chance, not yet. This Childhood Dementia Day, Wednesday 23 September, join our We Can't Wait campaign and help us change that.