Life Video

By Hannah Phillips

 

A four year old girl with a rare condition causing her to shed skin every four hours has landed a modelling contract.

Harper Foy’s parents feared she’d never lead a normal life when she was diagnosed with Harlequin Ichthyosis – a rare and severe genetic disorder which covered her in thick skin that restricts breathing and blood flow – hours after she was born.

Angie, 43, and Kevin, 42, lovingly bathed their daughter four times a day in a bid to help her sore skin which shed throughout the day – and feared for her future as other kids refused to touch her as she grew up.

But now mum of three Angie, from Washington, US, has revealed that a model agency has signed up Harper to their books.

The estate agent said: “She’s come a long way since she was born, she’s a miracle.

“She signed a modelling contract which I hope will increase awareness of the condition.

“The more people that know about the condition, the less people will stare or think she’s scary.

“A lot of kids don’t want to touch her because they think she’s contagious so it’s important to raise awareness.

“Her personality is unmatched, she loves the camera and she has so much self confidence which she really needs going into the world.”

After Harper was born, the tot was at risk of losing her limbs as the extra skin restricted the blood flow but emergency surgery saved her arms and legs.

Angie said: “When she was born, she was encased in a thick, hard, white casing.

“I had no idea she had the condition because I had a normal pregnancy, everything went well and I felt fine.

“She was my third child and the first two were unaffected. I had a normal pregnancy, I felt fine, everything went well.

“I’ll never forget, when I was having my caesarean, the doctor told my husband to get out his camera and that’s when it all changed.

“I knew something was wrong with her but it was all a bit of a blur.

“Doctors had never seen anything like it so they documented her journey in case another baby was born with the same thing.

“They just took a photo of her and send it to a specialist who diagnosed her.

“It was such a weird time, we were so scared.

“It was the unknown every day.

“We just had to bathe her all day every day and then about three weeks later, the skin came off.”

Four years later and Angie and project manager Kevin spend four hours a day bathing Harper and lathering her in soothing balm to make her comfortable.

Angie said: “Her skin care routine is time consuming because she makes new skin every couple of hours.

“She’s always shedding her skin and it’s itchy, dry and uncomfortable.

“Most with the condition lose their feet and hands as the skin is so tight, it restricts the blood flow, but doctors made incisions in her wrists and ankles so that wouldn’t happen.

“She did lose the tips of her fingers on her left hand.

“If she’d have lost her limbs that would have been a different ball game.

“She would have had this severe skin condition and be in a wheelchair so that would have been even more devastating.”

Angie hopes that Harper’s modelling career will help raise awareness of the condition, which affects one in 500,000 births.

She said: “Different disabilities are being shown now in modelling.

“There are deaf, blind and down syndrome models showing kids who are different which is amazing.

“Harper needs to know it’s just skin.

“She’s so fun and spunky and just a hoot.

“She loves to sing and dance and she’s so special.

“She loves photo shoots and if you put some music on, she does her thing.

“The modelling contract was perfect timing because she’s at the right age where she’s ready for it.”