April
April, mother of Jackson.
Jackson had Krabbe Disease.
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“My race does play a role in my need to strive to be overly on top of information. I want to be taken seriously as Jackson’s advocate.”

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

A mother’s need to get as much information as possible; while the pediatrician may be protecting against too much.

Feeling as a PARENT at home vs Speaking as a professional advocate for my son in the hospital

During his life, and at his service, I didn’t really want to share Jackson a lot with other people.

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

The value of Palliative Care: At first I thought they were the Grim Reaper, but I learned they would always be there for us.

A mom on deciding this time NOT to treat. “When its disease progression, forward doesn’t look the same.”

A quiet end to my son’s life

A mom on grief in bereavement: “I hope to be myself again.”
