CPN | Two children with rare disease in one family; Two different deaths.

Two children with rare disease in one family; Two different deaths.

Parents in one family with two young children who die from a rare disease describe the two children’s separate deaths and how they differed: one died quickly with no pain medication, one slowly with a lot of medication required. “You think you know what you’re going to do. You make plans but like birth, things don’t always go according to the plan. You have to be flexible.”

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