skin

‘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.”

‘Her skin hardened within seconds. It began to split. My husband’s silence scared me.’: Mom says daughter born with Harlequin Ichthyosis is ‘beauty in the purest form’

“He told me, ‘Jennie, I looked in her eyes, and she has the most beautiful soul.’ Broken is the only way to describe the feeling as they placed her in my arms. They had never seen anything like this. She was fine; everything was perfect, and then it wasn’t. But Anna was meant for me, and I for her, and together, we will show the world what true beauty is.”

‘Honey, something’s wrong.’ Our baby’s skin was marbled and black. I had no idea what was going on.’: Mom’s son diagnosed with extremely rare skin condition CMTC, loves his ‘special skin’

“I’ll never forget my response. ‘I’m sure it’s just a bruise.’ At first, every test came back ‘normal,’ doctors said it was just an ‘injury.’ We were told a list of things to do and sent on our way. Until we learned it was an extremely rare condition with less than 500 cases in. the. world. How does one process this sort of rarity?! In my mind he was the most beautiful thing I’d ever laid my eyes on. My rainbow baby. But, would he be OK? I was euphoric and crushed at the same time.”

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