Girl, 8, Has 'Open Wound' Skin That Cracks Like Thick Plates. How Her 'Strong' Will Keeps Her Alive (Exclusive)

When Angie Foy gave birth to her third child in 2015, she immediately knew something was wrong.

“Our life changed the moment she was born. They told my husband to put his camera away, and [delivery] the room became really quiet. I could tell by the look in his eyes and the doctor’s eyes that they were squirming like something was going on,” Angie, 48, tells PEOPLE exclusively. “They had no idea what was wrong with her.”

Harper Ly Foy was born with harlequin ichthyosis, a rare genetic skin disorder in which the skin is covered in thick plaques that crack and split, according to the National Organization for Rare Diseases.

“What happens is that her skin builds up and she sheds it 10 times faster than us. So in the womb for eight months, all that skin built up and became a really thick, white armor, and it was very coated. Her eyes were turned upside down. I mean, she looked different,” says Angie, who lives with her husband, Kevin, Harper, and their two older children in Edmonds, Washington.

After photos of newborn Harper were sent to Seattle Children’s Hospital, a dermatologist on the ichthyosis board recognized the condition and Harper was airlifted to the hospital where she spent the next three months.

“Every day she fought for her life,” says Angie. “She shouldn’t have lived.”

Angie Foy and daughter Harper as a newborn.

Courtesy of Angie Foy

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The first months of Harper’s life were an “overwhelming whirlwind,” says Angie, who was unable to hold or breastfeed her daughter. Because the plaque on Harper’s skin was so thick, her circulation was restricted and she was in danger of losing all four limbs.

It was Harper’s father who suggested doctors try to cut through the plaque so her limbs could breathe — a procedure that proved successful, but not before Harper lost the fingertips on her left hand.

“But you know what? She still does everything. Nothing stops her. She plays basketball, she plays soccer, she plays flag football, she models, she dances, she does it all,” says Harper’s Angie, now eight.

However, Harper’s condition requires significant lifestyle changes, including a multi-hour bathing routine, Aquaphor baths and a large amount of disposable clothing.

Harper Foy as a baby.

Courtesy of Angie Foy

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“It makes me so proud, I feel like we’ve come a long way. The first few years were really, really hard to navigate this new life and it was challenging, but now we have a really good regime and routine with her,” says Angie. “We give her three one-hour showers a day so she’s in the water a lot, but it’s to keep her skin hydrated and comfortable.”

Angie describes Harper’s skin as an “open wound” that is prone to infection because her body lacks a certain protein.

“Our regimen is very rigorous, but I’m just happy that she’s such a strong little girl with everything she has to endure every day. It’s hard for her. It hurts, especially when I get her scalp with all this buildup. But she’s still happy, she’s still Harper, and she’s the life of the party,” says Angie.

Angie and Harper as babies.

Courtesy of Angie Foy

Since a big part of keeping Harper comfortable and infection-free is about keeping her skin moist, Angie also slathers Harper with Aquaphor. An 8-year-old needs enough Vaseline to go through a 14 oz. jar every two days.

“It ruins her clothes,” Angie says. “It’s not like a normal kid where I can just wear my clothes all day and that’s fine. I spend hundreds of dollars a month on clothes because of all the little things—underwear, tank tops, and socks—that come first after Aquaphor and just absorb.”

Angie estimates that the money she spends changing Harper’s clothes, combined with the family’s large water bill due to Harper’s bathing routine, totals thousands of dollars a month.

“It’s very expensive to have a child with special needs,” says Angie, “but I try never to dwell on the negatives because if that were the case, we’d be miserable and she wouldn’t have the perspective or attitude or courage or happiness that she does.”

Angie and Harper 2024.

Courtesy of Angie Foy

Harper tells PEOPLE that when she’s not hanging out with her siblings, Sam, 25, and Jaxon, 14, or enjoying PE class while school is in school, one of her favorite things to do is “go shopping with my mom and eat chicken nuggets .”

In September, Harper will head to New York Fashion Week to model at the 10th anniversary fashion revolution for Runway of Dreams.

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“She walks the runway. I’m so excited for her. I am trying to use our platform to raise awareness [and show] that beauty goes beyond skin deep,” says Angie. “I just want everyone to know that she’s just like any other kid.”

Categories: Trends
Source: HIS Education