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 on her left hand fell off because the blood flow had been cut off, and doctors tried to save the rest of her hands and feet. It was so traumatic and scary, facing the unknown. Every day we’d go to hospital and were given the worst-case scenario. We didn’t even know if she was going to live or die. It was like your worst nightmare. My husband, Kevin suggested making incisions on her legs and arms – like cutting open a plaster cast – to loosen the plaques and release the pressure and get her blood circulating properly. The procedure, performed when she was only a few days old was very successful in saving her fingertips and feet, but did leave her in more pain. The plaques began to fall off – first her neck, then her torso and limbs.
At three weeks old, I was finally able to hold Harper for the first time. When she was two months old, the mask of skin on her face finally came off, revealing Harper’s ‘beautiful eyes and smile. We were told that the condition was due to a recessive gene which they passed on to Harper, leading to her having HI. We finally got to bring her home before the Holidays in 2015, but had to adapt to a new routine to try to stop her skin cracking and bleeding as this can lead to infections. Now, three hour long baths every day in hot water help to keep her skin soft – although it is still so tight that she struggles to walk up stairs. Harper also goes through a 14oz jar of Aquaphor – a petroleum jelly-like ointment for severely dry skin – every three days. We have to put that on her five or six times a day, which ruins her clothes.
I spend hundreds of dollars on new outfits for her each month. I guess she’s lucky in some ways that she’s got a constantly changing wardrobe – like a famous model. One of the hardest things our family faces is the comments from other people about how Harper looks. One grandma asked me why I didn’t put sunscreen on my daughter, as if she was sunburnt. I couldn’t believe that came out of her mouth. Another time a couple of years ago, we were in this juice bar and some kids came up to say hi to Harper – and their Mom grabbed them and told everyone to stay away, because she was obviously contagious. I almost flipped my lid that a Mom could act so shamefully. But, instead, I held my head high, picked up Harper and we smiled at them. Still, the daily stares she attracts on the street do not faze Harper. In 2019, I wanted to improve our daughter’s confidence so I emailed photos of Harper to TCM Models and Talent – a modeling agency in Seattle. They absolutely loved Harper’s energy. She’s got this unmatched personality, this sense of fun. They signed her up that day for a two-year contract!
Since then, Harper has built up an impressive portfolio and even became the poster girl for Seattle Children’s Hospital in January 2020, when she took part in a shoot with the Seattle Seahawks football team. She absolutely loves the Seattle Seahawks football team, just like her Dad & brother. She’s such a tomboy, but she also loves to dress up, dance, sing or play her ukulele for us.
Once the pandemic struck last year, her career had to be put on hold so I focused on building Harper’s social media presence, starting an Instagram account chronicling our daughters journey, @harper.incredible, which now has 12,000+ followers.
-Angie Foy, Harper's Momma