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fabian2kyesterday at 9:35 PM2 repliesview on HN

It's worse than that. The therapy likely killed her, and her condition wasn't fatal in the first place.


Replies

asqueellayesterday at 9:52 PM

I was curious what non-fatal condition would make the parents so desperate (to participate in a first-in-human trial):

> Mei was diagnosed with global developmental delay .. some of Mei’s behaviors .. were associated with autism.

> CHD3 mutations produce a condition called Snijders Blok-Campeau syndrome

> people with the mutation often have a normal life expectancy, but their symptoms vary widely. Most have slightly larger than normal heads, and about two-thirds have intellectual deficits. Moderate to severe cases may be nonverbal, suffer from seizures and heart problems, and have fluid-filled voids in their heads.

processingyesterday at 9:47 PM

"global developmental delay" yeah this is tragic - this kid didn't need to go through this.