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Navigating Medical Complexity Coping With Loss Neurojourney

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Theme: Hope

The quest for a cure: Sometimes, I don’t know what to hope for.

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The quest for a cure: Sometimes, I don’t know what to hope for.

The quest for a cure: Sometimes, I don’t know what to hope for.

The mom of a 5-year old boy with juvenile Tay-Sachs talks about the confusing ambivalence that comes with having a child whose disease is progressing and hoping for a cure that may not come in time. “This isn’t who he is supposed to be. This is something that is happening to him.”

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