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Navigating Medical Complexity Coping With Loss Neurojourney

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Theme: Dads

Mom wants to know what it’s going to be like; Dad doesn’t until he gets there.

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Mom wants to know what it’s going to be like; Dad doesn’t until he gets there.

Mom wants to know what it’s going to be like; Dad doesn’t until he gets there.

Parents of an infant with Gaucher Type 2 talk about their different wants regarding knowing the disease progression. Dad focused on the data and science and couldn’t read the stories. Mom wanted the stories, the connection to others who had gone before. She would watch CPN videos and then select videos for him to watch too.

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