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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

“We were not ready for her actual diagnosis.”

Page: 4 of 4

“We were not ready for her actual diagnosis.”

“We were not ready for her actual diagnosis.”

Parents Jordan and Julia describe their baby daughter’s early arrival, beginning in the NICU, and the slow trickle of bad news leading to a diagnosis of Infantile Epileptic Encephalopathy. “The screaming in my head was so loud.”

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