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 knew immediately that something wasn’t right. 

“Our life changed instantly when she was born. They told my husband to put his camera away, and the [delivery] room got really silent. I could just tell from the look in his eyes and the doctor's eyes that they were scrambling 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 plates that crack and split, according to the National Organization of Rare Disorders.

“What happens is her skin builds up and she sheds skin 10 times faster than us. So, in the womb for eight months, all that skin built up and it became a really thick, white body armor, and it was really hard plated. Her eyes were inverted inside out. 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 a 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 was fighting for her life,” says Angie. “She wasn't supposed to live.”

The first months of Harper’s life were an “overwhelming whirlwind,” says Angie, who wasn’t able to hold or breastfeed her daughter. Because the plaque on Harper’s skin was so thick, her circulation was restricted and she was at risk of losing all four of her limbs.

Harper's father was the one who suggested the doctors try slicing through the plaque to allow her limbs to breathe — a procedure that proved to be successful, though not before Harper lost the fingertips of her left hand. 

“But you know what? She still does everything. There's nothing that stops her. She plays basketball, she plays soccer, she plays flag football, she models, she dances, she does it all,” says Angie of Harper, who is now eight. 

Still, Harper’s condition requires significant lifestyle modifications, including an hours-long bathing routine, tubs of Aquaphor and a large volume of disposable clothing. 

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

Angie describes Harper’s skin as an “open wound” that’s prone to infection because she’s missing a particular protein in her body.

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

Since a large part of keeping Harper comfortable and infection-free centers around maintaining her skin's moisture, Angie also slathers Harper in Aquaphor. The 8 year old requires so much of the petroleum jelly that she goes through a 14-oz. jar every two days. 

“It ruins her clothes,” says Angie. “It is not like a normal kid where they could just wear their clothes all day and it's fine. I spend hundreds of dollars a month on clothes because of all the little things — the underwear and the tank tops and the socks — that are first on after the Aquaphor and just soak it right up.”

Angie estimates that the money she spends replacing Harper’s clothing, combined with the family’s large water bill due to Harper's bathing routine, costs thousands of dollars a month in total. 

“It's very expensive having a kid with special needs,” says Angie, “but I try never to dwell on the negatives because if that was the case, we would be miserable, and she wouldn't have the outlook or the attitude or the spunk or the happiness that she does.”

Harper tells PEOPLE that one of her favorite things to do when she's not hanging out with her siblings, Sam, 25, and Jaxon, 14, or enjoying P.E. class when school is in session, is to “go shopping with Mommy and eat chicken nuggets."

In September, Harper will head to New York City for fashion week where she’ll model in the 10th anniversary of Fashion Revolution for Runway of Dreams. 

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“She's walking the runway. I’m so excited for her. I’m trying to use our platform to raise awareness [and show] that beauty runs more than skin deep,” says Angie. “I just want everyone to know that she's just like every other kid.”