baby with rare disease

‘Is she breathing right now?’ She was limp, almost lifeless. I watched in fear as they loaded my tiny 1-month old baby girl into the ambulance.’: Baby is born with rare chromosomal deletion, ‘We basically won the lottery with her.’

“Hattie had been born with a significant deletion of her first chromosome. We had no idea what this all meant. Hattie was one in a billion. We received a plethora of mail. ‘Dear parent or guardian of a child with special needs.’ Special needs? Hattie doesn’t have special needs, does she? As far as we knew, Hattie seemed completely normal to us! We have learned to avoid the CAN’Ts and focus on all the CANs.”

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