Living in the Space Between Diagnosis and Death

Living in the Space Between Diagnosis and Death

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Living in the Space Between Diagnosis and Death

What bookends to live between — diagnosis and death. This is a hard place to be, no matter where you fit in — the patient, the caregiver, or a family member or friend of any of these people. No one ever wants to be here, but sometimes it’s where we end up. After my daughter Abby was diagnosed with Sanfilippo syndrome in 2017, it took a while to get past the shock of the diagnosis.…

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