rare chromosomal disorder

‘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.”

‘My wife must regret spending her life with me. If she met someone different, she’d have perfectly healthy children,’ I told myself. ‘He is one of 34 people known to have this.’ My heart sank. ‘What? In the country?’ ‘No, in the world.’

“I remember thinking, ‘Maybe we just aren’t the best of parents.’ Little did I know my wife was secretly researching and had discovered a condition. One day, she showed me a video. My heart sunk. I felt dizzy. Straight away, I knew this was what our boy had.”

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