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Navigating Medical Complexity Coping With Loss Neurojourney

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Home > Receiving The Diagnosis > Themes

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Theme: Receiving the Diagnosis

Fundraising for Research: I was transported to Ben’s Future and I wasn’t ready for it

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Fundraising for Research: I was transported to Ben’s Future and I wasn’t ready for it

Fundraising for Research: I was transported to Ben’s Future and I wasn’t ready for it

Parents of a boy diagnosed with SanFillipo Syndrome discuss their early response to the diagnosis. “We were spurred to action, butI think we went into the fundraising piece a bit naively. … What I didn’t hear from the doctor about the progression of the disease, I was hearing from parents.”

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