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Navigating Medical Complexity Coping With Loss Neurojourney

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Theme: Receiving the Diagnosis

Adapting to the Diagnosis: No Heroics,Focusing on Quality of Life

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Adapting to the Diagnosis: No Heroics,Focusing on Quality of Life

Adapting to the Diagnosis: No Heroics,Focusing on Quality of Life

“The best I could do as a parent is give her the best time I could in the time that we had.” The dad of an infant diagnosed with Gaucher Type 2 shares that he knew he wasn’t going to be the parent who focused on a cure in her lifetime — it is such a rare disease, that moves so fast, and there wasn’t a cure on the horizon. Quality of Life was the goal.

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