Your limbs twist inwards, you get something called cataplexy, which is the immediate and involuntary loss of muscle strength during laughter. As one NPC mom says, ‘NPC steals joy from laughter. NPC is always fatal. For kids like Marian, with early neurological signs under age two, it’s often fatal by age five or six. There are no John Wick 20 who’s going to stop me shirt approved treatments. So this is what we heard when the doctor said Marian has Niemann Pick Type C. All of this. All the air left the room. I wanted to give up, to fast forward through her suffering. To try to skip it somehow. But Marian is bursting with love, she is kind, she is funny, she fights for every single step forward. She’d already been fighting NPC her whole life, we just didn’t know it.
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