How do you describe life as a parent of a child with profound or life-limiting disabilities? "Inhumane. Insane. Pushed to the wire." Henrietta Spink veers from the language of despair to that of hope. "It has been an extraordinary journey," she says, with some positivity, of the past 26 years spent raising her two sons, both of whom need round-the-clock care. And then: "Our life has been destroyed."

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