Watch: Girl with extremely rare condition celebrates her uniqueness
A five-year-old girl with an extremely rare condition, which means her skin grows 10 times faster than normal, is celebrating her uniqueness by becoming a model.
Harper Foy, from Edmonds, Washington, is thought to be one of only 20 people in the US with harlequin ichthyosis (HI), which means she was born encased in thick plates of skin.
To keep the condition under control, she needs three long baths a day and moisturising around-the-clock.
Determined not to let her condition dent her confidence, Harper's mum Angie Foy, 44, signed her daughter up to a modelling agency.
“We call her our butterfly," Foy says about her daughter.
“She was born in a cocoon and now she has emerged into this beautiful little soul.”
Foy, who is also mother to Sam, 21, and Jaxon, 10, says her pregnancy with Harper felt no different, so when genetic tests for more common conditions like Down’s Syndrome came back negative, neither she nor her doctors could have predicted how Harper might look at birth.
“At every check-up we could see her little button nose and tiny fingers on the sonogram," Foy explains.
“We had no idea that they were encased in skin like an Egyptian mummy.”
Harper was delivered a month before her due date by emergency c-section after Foy’s waters broke in September 2015.
“I was on morphine, so I was completely out of it, but as soon as they took Harper out, I could tell from my husband’s face that something wasn’t right," said Foy.
“The doctor told him to put his camera down and Harper was whisked away. They told me she was fine, but there was something on her skin.
“I don’t think even the doctors knew for sure what was wrong with her, because they had never come across it before – only in textbooks.”
Watch: Boy with rare skin condition becomes a model.
A couple of hours later, Foy was wheeled down to the intensive care unit where Harper was lying in an incubator to keep her warm, as children with HI struggle to regulate their body temperatures.
Layers of skin had built up in the womb, forming a hard ‘armour’ that covered her entire body – even her eyelids.
Due to the open sores in the cracks, Foy was not allowed to hold her daughter in case she gave her an infection.
“When I saw her for the first time I was shocked and mainly scared for her,” she explains.
“But I instantly had a connection with her. I knew she was going to be such a fighter.”
The tips of Harper’s fingers on her left hand fell off soon after birth, because the blood flow had been cut off, and doctors were in a race against time to save her hands and feet from the same fate.
“It was so traumatic and scary, facing the unknown," Foy says. "Every day we’d go to hospital and were given the worst-case scenario.
“We didn’t even know if she was going to live or die. It was like your worst nightmare.”
Eventually the plates began to fall off Harper's body, first her neck, then her torso and limbs, followed by her face when she was two months old.
With her parents’ permission, Harper was visited by medical students from across the US, keen to learn about her condition.
Tests later revealed that Harper's parents both had a recessive gene which they passed on to Harper, leading to her having HI.
By December 2015, the couple were finally able to bring their daughter home, but they weren't quite out of danger yet as Harper is prone to infections because her skin is always cracking and bleeding.
On one occasion, when she was 18 months old, she ended up in hospital for a week battling four different bugs.
When she was a baby, doctors bathed Harper in bleach to keep her sterile.
Now, three hour-long baths every day in hot water help to keep her skin soft, although it is still so tight that she struggles to walk up stairs.
Over the years, the family say they have experienced many upsetting comments about their daughter’s appearance.
“One grandma asked me why I didn’t put suncream on my daughter, as if she was sunburnt," Foy explains.
“Another time some kids came up to say hi to Harper, and their mum grabbed them and told everyone to stay away, because she was obviously contagious."
But the daily stares she attracts do not seem to faze Harper, and, determined to improve her confidence even further, Foy emailed photos of her daughter to TCM Models and Talent in April 2019.
“They absolutely loved Harper’s energy," Foy reveals.
“She’s got this unmatched personality, this sense of fun. They signed her up that day for a two-year contract.”
A natural in front of the camera, Harper has built up an impressive portfolio and even became the poster girl for Seattle Children’s Hospital in January 2020.
But the coronavirus pandemic has put the brakes on her modelling career for now.
Instead, Foy has focused on building Harper’s social media presence, starting an Instagram account chronicling her daughter’s journey, @harper.incredible, which now has 11,000 followers.
“I couldn’t be more proud of Harper and all she’s achieved in her five years," Foy says.
“We don’t treat her any differently to our other kids. She’s beautiful in her own way, which is why I wanted her to get into modelling.
“I hope it keeps building her confidence and raising awareness about her condition.”
Additional reporting PA Real Life.
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