Apert syndrome

‘What’s wrong with her? Can it be fixed?!’ I had wide-set eyes, webbed fingers. People can’t help but stare.’: Woman meets child with similar Craniofacial differences, ‘I hit the jackpot and found belonging’

“I’m a closet Web MD researcher. I typed in all the things I was born with and a term popped up. Low and behold, there were kids all around the world that looked like me! I’ve always made up wild exaggerations as to why I was born this way. Now, I need no answer. For the first time in my life, I can say, ‘Me too.'”

‘What’s wrong with her fingers?,’ my husband asked. ‘They look strange, but they’re perfect.’ Then he saw her toes.’: Parents surprised by daughter’s Apert Syndrome diagnosis, ‘she just wants to be loved’

“The doctor yelled to get the NICU team as soon as possible. They came in so fast we could hardly get a picture. I don’t remember anything afterwards except that my husband googled her syndrome based on her appearance, and I was left alone in the delivery room. No husband. No baby. I asked for a Diet Coke. They only had Diet Pepsi.”

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