rare genetic disorder

‘MOM! WHAT HAPPENED?!’ The only reply was screams. Our boy was gone forever.’: Couple births miracle daughter with chromosome 17p duplication after nephew’s untimely death, ‘My guardian angel sent me the baby I’d always wanted.’

“My husband came to my side and scooped me up from the floor into his arms. He asked me what happened, but I couldn’t say it. ‘My boy…,’ I told him and trailed off. The pregnancy was confirmed just a week before his memorial service.”

‘My brother came to me in a dream last night and told me he was in heaven. He isn’t in pain anymore.’: Mom of 2 children with rare skin condition loses youngest unexpectedly, ‘Nothing could be done. My baby was gone forever.’

“’They’re here!’ I saw my husband staring with a scary look on his face. Everything went out of focus. I walked to his bed, and I sank to the floor. He was gone. I screamed, doctors came running in. They performed CPR but because of his disease, it tore all the skin from his chin to his chest. They told me his heart stopped due to complications. I later found out he was given fentanyl during the flight.”

‘My hands were shaking as I gripped my son’s tiny hand in the backseat. ‘Just hurry up and get to the hospital.’: Mom’s confusion after ‘idyllic’ newborn’s rare Congenital Adrenal Hyperplasia diagnosis

“Talk about nerves. ‘He’s a calm little guy!,’ my OBGYN assured us as they whisked him away to be washed and weighed. It was love at first sight. Then, just a few days before celebrating one month on this earth with our son, we underwent an intense baptism into a new, unimagined kind of parenthood. Our son was diagnosed with a rare genetic disorder.”

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