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Navigating Medical Complexity Coping With Loss Neurojourney

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Theme: Advance Care Planning

It has taken the specialists 11 years to get through to me.

Page: 4 of 4

It has taken the specialists 11 years to get through to me.

It has taken the specialists 11 years to get through to me.

The mother of a daughter with the life-limiting illness Canavan disease talks about how she frames the decisions based on her daughter’s quality of life and how important it is to have The Discussion with the medical care team. “When I’m ready, I do what needs to be done.”

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