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Theme: Receiving the Diagnosis

In the early scary days, with shock of diagnosis, parents don’t register the supportive resources they are handed.

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In the early scary days, with shock of diagnosis, parents don’t register the supportive resources they are handed.

In the early scary days, with shock of diagnosis, parents don’t register the supportive resources they are handed.

Timing is everything. The mom of a boy diagnosed at 4 months with Krabbe disease describes what types of information parents can handle in the early days with diagnosis: clinical information early, then they build a capacity to think more broadly about finding support. “If they had anyone in the hospital when we were having our longer stays, when we were not in a scary place, but just in a waiting and testing place, I would have loved to have learned more.”

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