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Theme: Palliative Care

A diagnosis of Krabbe; and the medical team getting to meet him before his condition progressed.

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A diagnosis of Krabbe; and the medical team getting to meet him before his condition progressed.

A diagnosis of Krabbe; and the medical team getting to meet him before his condition progressed.

Jackson’s mom describes the journey to his diagnosis with Krabbe disease (an LSD) at 4 months old, including the moment when the medical team delivered the diagnosis. She is glad so many clinicians were in the room because they got to ‘see him in all his perfectness’ and establish baseline.

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