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.

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

Harper’s condition, Harlequin Ichthyosis, could not be detected in utero. Her parents did not know anything was wrong until Harper was born.

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

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.

A difficult start

Harper’s father, Kevin, says he’ll never forget the day his daughter was born. In the delivery room, the doctor told him to get his camera ready. He was poised to take Harper’s first photo when the room suddenly became silent.

Seconds later, chaos erupted. Harper was immediately whisked out of her room and taken to the neonatal intensive care unit (NICU).

Because of her complex condition, Harper was transferred to Seattle Children’s, where she was assessed by a team of specialists from a variety of backgrounds, including dermatology, plastic surgery, anesthesia and neonatology. The teams worked together to create a one-of-a-kind treatment plan for Harper.

“Our approach was novel,” Dr. Deepti Gupta, a dermatologist at Seattle Children’s, said. “The literature on cases of children with HI is limited, so much of her care was developed by the team as challenges arose.”

Initially, Harper’s outlook was uncertain. Plastic surgeons were concerned Harper could lose her limbs. They worked quickly to release the plaques and restore circulation to her extremities, saving her hands and feet. Within just a few weeks, she made miraculous progress and was able to go home.

“Without Seattle Children’s, Harper wouldn’t be here today.” Angie said. “We are forever grateful.”

Redefining beauty

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.

“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.

Baby Harper with her two older siblings. “Harper’s family is incredible,” says NICU nurse Mari Moore. “The way they have supported her and navigated this journey together has been amazing to watch.”

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.”

A photo shoot to remember

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.

When Harper was only a few weeks old, Russell Wilson visited her and her family in the hospital. The Seattle Seahawks quarterback sauntered into her hospital room, a smile on his face, and a warm, reassuring presence surrounding him.

From that day forward, Angie says Harper has been a huge fan. She feels most confident adorning green and blue and her favorite jersey: Wilson #3.

When Harper saw Russell’s jersey hanging in the makeshift dressing room, she immediately began to chant, “SeaHawks!”

“This is why we do what we do,” Gupta said.

Harper has come a long way since she was a newborn at Seattle Children’s, fighting for her life. Now, seeing her smile, laugh and enthusiastically spike a football for the camera made everyone in the room beam.

“A lot of times, working in the NICU, the patients leave and we never see them again or know how they’re doing,” Mari Moore, one of the nurses who cared for Harper in the NICU, said. “And especially with Harper, she left such an impression on all of us, it was really great to see her 4 years later doing so well. She’s quite an amazing soul.”

 

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For Angie, seeing her daughter back at Seattle Children’s reminds her there are no limitations to what Harper can achieve.

“She’s just incredible,” Angie said. “She is meant to do great things.”

Harper Foy at her very own photo shoot, posing with the clinical team who saved her life: nurses Maria Castelo, Gretchen Bjelke, Mari Moore, Dr. Deepti Gupta and Dr. Raymond Tse.