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4-year-old with rare skin condition signs modeling contract

Harper Foy doesn’t look like other girls her age, but she’s hoping her unique appearance will redefine what beauty means.
Harper's favorite team is the Seattle Seahawks and Russell Wilson even visited her when she was still in the NICU.
Harper's favorite team is the Seattle Seahawks and Russell Wilson even visited her when she was still in the NICU.HMMM productions / Seattle Children's
/ Source: TODAY

When Harper Foy came into the world four years ago, the world around her felt still.

“They said ‘Get your camera ready, she’s ready to come out,’” her mom, Angie Foy, recalled to TODAY. “And as soon as she started to come out, the whole room, like, stopped.”

Harper didn’t look like other babies and immediately, the doctors jumped in.

“I could just tell something wasn’t right,” Angie said. “I kept asking, ‘What’s wrong? What’s wrong?’”

Her newborn had a genetic condition the hospital had never seen before: Harlequin Ichthyosis (HI).

Harper as a newborn in the NICU with her mom, Angie.Angie Foy

Some babies born with it only live a few days, and Harper's doctors told Angie they weren't sure she would make it.

“I was on morphine so I don’t remember too much of it, and I just remember getting transferred and not knowing if she was going to live,” her mom recalled.

But Harper is a fighter and survived those first few days. Now, she’s thriving at her home in Washington State, despite needing around-the-clock care. Her mom handles most of it, including three to four baths or showers a day and constant re-application of Aquaphor to her skin.

Angie said she carries a jar of Aquaphor with her at all times, and reapplies every hour or so.

“When we take her out and she’s not all lubed up, that’s when people really start staring and getting scared,” she explained. “She’s red, so that’s what stops people. And she’s very scaly.”

Angie likened her daughter’s skin to fish or snake skin.

“We tell people she makes new skin like a snake,” she said. “They shed every couple hours and that’s what she does.”

However, Harper seems to have taken her condition in stride so far and isn’t self-conscious about her appearance.

Harper's personality really shines through in these photos from her most recent shoot!HMMM productions / Seattle Children's

“She’s super cool, she has the best personality and I think that shows, that’s why everyone’s fascinated by her story,” Angie said. “That’s why she’s getting modeling contracts.”

Harper took to the camera immediately, Angie said, and that’s what inspired her sign with a Seattle agency.

“You kind of see nowadays there are more and more models getting signed that are different,” Angie explained. “They loved that we’re trying to redefine beautify and tell her story and I think they loved Harper’s personality.”

"Plus, I just think she's so cute!" her mom laughed.

Harper hasn't booked any gigs yet, but her Seattle Children's Hospital care team recently helped organize a photo shoot for her.

Harper poses with her care team at Seattle Children's Hospital.HMMM productions / Seattle Children's

Harper is only the 20th person in the United States living with the condition, Angie said, and there isn’t much data on the condition. She added the oldest person they know with HI is a 34-year-old in Hong Kong.

Whatever Harper’s future holds, Angie hopes she never changes.

“She was born to do this,” Angie said. “She’s teaching us all something and she’s here for a reason.”