Apert syndrome

‘I don’t want any more operations!’ It was so hard on me, I decided enough was enough.’: Woman with Apert Syndrome wants people to know, ‘‘I have a great personality if people take the time to get to know me’

“I was about 6 or 7 when I truly realized I was different from other kids. I looked different. There was a lot of staring, whispering, and pointing fingers from other people, as they had never seen anyone like me. I sometimes feel lonely and would love to have more friends.”

‘The doctor said, ‘I don’t want you to think everything is okay. It’s not. Your baby’s hands are fused together,’ then left the room.’: Mom to son with Apert Syndrome urges for kindness, ‘It’s the best gift you can give’

“‘I’m sorry, but he will definitely have mental issues and live in a home.’ The doctor told me to go home. The second I made it to the car, I lost it. I was crying uncontrollably. I called my husband, but I couldn’t get anything out. ‘Ashley, I need you to PULL OVER. I’m coming to get you.’ I couldn’t, I was so distraught. I just wanted to get home where no one could see me.”

‘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.”

‘Through screaming, I coded at 1:25 p.m. 5 minutes later, my son was born not breathing. He was bagged and taken for CPR.’: Mom births baby with rare apert syndrome

“The next thing I knew I felt like I was drowning. I could hear codes being called as my birth got harder to take.‘He’s not fatal, but we have no idea what’s wrong.’ He had 10 fingers and 10 toes, but they were fused together. A first-time mom, I feared I was going to break him. Every irrational fear went through my mind.”

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