4-year-old girl with 'skin like a snake' 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. From day one, Harper Foy has defied the odds. When she was born, she was given a 50% chance of survival. Today, the spunky toddler, who loves to dance, sing and pose for photos, is 4 years old and inspiring many.

4-year-old girl with 'skin like a snake' signs modeling contract

“Harper is here for a reason,” her mother, Angie Foy, said. “She’s making a difference in the world.”

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. “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 was born with an incredibly rare genetic condition called Harlequin Ichthyosis (HI) that occurs in just 1 in 500,000 newborns.

4-year-old girl with 'skin like a snake' signs modeling contract

When Harper was born, she was covered in thick plaques, much like armor. Fissures in the hard encasing webbed across her tiny body. Blood flow to her extremities was constricted and her skin was pulled so tight that the plaques cut off blood flow to her hands and feet and her eyelids had flipped inside out.

“It was devastating,” Angie said.

Doctors at the hospital where Harper was born told her parents they had never seen anything like it. They didn’t know if she was going to survive. Some newborns born with HI only live a few days.

“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 told TOGAY

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.

Today, Harper’s condition is managed by an intensive skin care regimen. She takes up to three baths a day, and every few hours her mother covers her in Aquaphor to protect her skin.

4-year-old girl with 'skin like a snake' signs modeling contract

“Care for Harper’s skin is a full-time job,” Angie said. “It’s not always easy, but it’s our normal.”

Harper’s skin is not like that of a typical child. It is red, scaly and dry. It sheds frequently, and her mother likens it to that of a snake. It is especially sensitive to heat and trauma. Angie likened her daughter’s skin to fish or snake skin.

4-year-old girl with 'skin like a snake' signs modeling contract

Because of her appearance, people often stare at Harper, Angie says. Some avoid getting close to her because they think her condition is contagious. Others assume she’s a burn victim.

Harper has overcome so many challenges and obstacles in her young life. Her mother hopes she can also overcome the value society places on appearance.

“We want her to know she is beautiful, both inside and out,” Angie said. “Society’s definition of beauty needs to be redefined — it is not just skin deep.”

To help revise those standards, Harper recently signed a contract with a local modeling agency. Her family hopes modeling will build her confidence and raise awareness for HI.

“As human beings, we tend to focus on our differences,” Dr. Raymond Tse, a plastic surgeon at Seattle Children’s who treated Harper as a newborn, said. “Some of those differences can be subtle, whereas others are overt. It’s important for all of us to see who someone really is. From there, the beauty in our diversity can make our world a better place.”
Gupta hopes it’s also a message that resonates for children like Harper.
“I want all of my patients to know they are beautiful, no matter what their skin ailment may be,” Gupta said. “We all have differences but those do not change who we are inside and what we can achieve.”

4-year-old girl with 'skin like a snake' signs modeling contract

To help Harper share her empowering message, her care team coordinated a special photo shoot for her at the hospital. When she arrived, Harper was taken to her own VIP dressing room decked out with magazine covers featuring her portraits, a vanity and a dresser filled with tiaras and various outfits in her chosen theme — the Seattle Seahawks.


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