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Childhood Dementia: What It’s Like Raising Kids With This Incurable Disease 

Children are dying from dementia at the same rate as they are dying from cancer, but few people know what it is, and research is underfunded.

One in every 2,900 children are born with childhood dementia, a progressive disease
that is caused by rare neurodegenerative genetic disorders.

Half of children born with childhood dementia will die by the age of 10.

Megan Maack, Founder and CEO of the Childhood Dementia Initiative, has two children with Sanfilippo syndrome, a form of childhood dementia.

Megan Maack spoke about what it’s like raising kids with dementia on The Briefing:

“We have counter milestones where all of those firsts, the first word, the first step, we’re now looking at the lasts, and they’re starting to decline,” Maack said.

“Parenting for me now isn’t about shaping the human to become an adult and go out into the world. To me, parenting is about making my child feel secure, loved,” she said.

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Maack said there has been an underinvestment in research and little progress on treatment opportunities for childhood dementia.

“Over the last twenty years where we’ve seen pediatric cancer death rates halve.
We’ve seen the life expectancy of cystic fibrosis double. We’ve seen no notable
improvement in the survivorship of any of these conditions that cause dementia in
children,” she said.

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