Experimental Treatment for Rare Children's Disease to be Discontinued

“It destroys all of your abilities,” said her mother Sara McGlocklin.
Because it affects memory, it is sometimes referred to as “Childhood Alzheimer's,” but Niemann-Pick ravages the whole body.
“It will take their ability to talk, to think, to walk, to swallow. It takes everything from them. It's fatal 100% of the time,” said Sara. “It's the worst feeling in the world that you can ever experience -- to feel like your child only has suffering and pain ahead of them."
Almost immediately after Marian was diagnosed at 18 months, she received an experimental treatment called Adrabetadex.
Doctors at Children's Hospital Los Angeles have injected the medication into Marian's spine every two weeks since 2017.

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