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In the media: ‘How do I tell my kids they won’t grow up?’

Updated: May 29

"How do I tell my kids they won't grow up" - By Rebecca Whitefield-Baker (Adelaide Now), Sunday November 6, 2022. Read the full article here.

Renee Staska's children have been diagnosed with Niemann-Pick Type C, which causes childhood dementia.
Renee Staska with Hudson, 7, Holly, 6, and Austin, 4, who all have a rare genetic disorder called Niemann Pick type C. (Picture: Naomi Jellicoe)

Sharing your heart-breaking story with the world is never an easy task. With help from the Childhood Dementia Initiative, Renee continues to raise awareness for disease like Niemann-Pick disease type C that cause Childhood Dementia.


"Ultimately I want a cure ... somthing that is going to help my kids and other kids - raising awareness is an important part of that," Ms Staska said.

In the article, Renee shares how her family discovered the "bombshell diagnosis"of her three children and the emotional rollercoaster that followed.


To help families like Renee around Australia, as well as fund vital research for a cure... Support the Australian NPC Disease Foundation in its goals of "Research. Cure. Persevere."


Ways to support NP-C in Australia:

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