Harper Foy, five, needs three long baths a day and constant moisturizing because of a rare skin condition, which makes her skin grow 10 times faster than normal. Harper is thought to be one of only 20 people in the US with harlequin ichthyosis (HI). My husband & I wanted to help build her confidence and before the pandemic, we signed her with a local modeling agency in Seattle, Wa. Now with the world moving towards some normality, we are excited for her to book more jobs and appear on billboards.
We call her our butterfly. She was born in a cocoon and now she has emerged into this beautiful little soul. We have 2 older kids, Sammy 21 and Jaxon, 10, my pregnancy with Harper felt no different.
We had genetic testing done, but everything came back normal. We had no idea about Harper’s condition before she was born. Harper was delivered a month before her due date by emergency c-section after my water broke in September 2015. I was on morphine, so I was completely out of it, but as soon as they took Harper out, my mother’s intuition kicked in. I could read the room and tell from my husband’s face that something wasn’t right. ‘The doctor told him to put his camera down and Harper was whisked away. They told me she was fine, but there was something on her skin.
I don’t think even the doctors knew for sure what was wrong with her, because they had never come across it before – only in textbooks. Harper was placed in an incubator to keep her warm, as children with HI struggle to regulate their body temperatures. A few hours after she was born, I was able to meet her. Layers of skin had built up in the womb, forming a hard thick ‘armour’ that covered her entire body – even her eyelids, which had been inverted from the thickness of the plaques. Due to the open sores in the cracks, and the uncertainty, I was not allowed to hold our daughter. When I saw her for the first time I was so scared, but I instantly had a connection with her. I knew she was going to be such a fighter.
The next day, Harper was transferred to Seattle Children’s Hospital. Soon after birth, the tips of Harper’s fingers