rare

‘This is when my daughter is most beautiful, covered in layers of extra skin. Celebrate her, instead of giving me pity.’: Mom of daughter with Harlequin Ichthyosis wishes people would ‘stare at her beauty’ instead of ‘hiding their stares’

“I remember vividly the first time Anna opened her eyes. She stared with such intent that I couldn’t bring myself to look away. The swelling from her eye lids had finally gone, and she opened her eyes and stared directly at me. I get mesmerized by the beauty in her skin. I know she was made for something special.”

‘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.”

‘No eyebrows and eyelashes,’ she said. I hadn’t noticed his lack of hair. She ran her hand across his sweet face. There was a concern.’: Mom learns of son’s rare CFC syndrome disorder, but keeps ‘pushing forward’

“Our midwife came in and hugged me. ‘How are y’all doing?,’ she asked. It was all too much. What did she mean by ‘abnormalities?’ I stopped her and asked. That’s when the rest of the conversation disappeared from my memory. I would NEVER let this define Nolan.”

‘I’ve never had real parents before. I’ve waited my entire life to be treated the way y’all treat me.’ Couple adopts 18-year-old who was ‘abandoned by his birth mother with no name’

“‘So you are the people that want teenagers… are you crazy?’ I said, ‘Something like that.’ She replied, ‘Well, I got a phone call in your driveway for a 16-year-old male who needs a home by tonight.’ I told her, ‘Bring him home.’ My husband looked at me like I was crazy. But he agreed. ‘She’s right, bring him home.’”

‘My mom rushed in shouting, ‘Get up! Get up! I need you to keep your dad from getting out of bed.’ I sprinted to their room. ‘911? This must be serious! My mom is running, she never runs!’

“My dad was a zombie. He groaned this horrendous noise. As tears rushed down my cheeks, I ran over. There was a surprise guest waiting to pick me up. ‘They are not sure your mom is going to make it,’ he said. ‘But everyone said it wouldn’t be like my dad!,’ was all I kept repeating.”

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