Jessie can’t read, write, talk or walk. Most Australians don’t know her condition even exists

The number of Australians living with childhood dementia in 2021Funding per-child for childhood dementia versus childhood cancerCindy Lorenz took one look at the photograph of the little girl with wild black hair and knew instantly: “That’s my kid.”

“When I speak to people about childhood dementia, almost 99 per cent will say ‘I didn’t know this was a thing’,” said director and chief executive of the Childhood Dementia Initiative Megan Donnell. “The next thing they say is ‘why have I never heard of this?’ The more than 70 rare genetic conditions that cause childhood dementia have been studied and treated separately, resulting in fragmented funding, stalled therapeutic advancements and fractured support structures, the report said.

brain deterioration. really not much of a quality of life and I'm sure it's f****** agony for the parents. I don't know.

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