Four-year-old Harper Foy suffers from harlequin ichthyosis, a rare genetic disorder that makes her skin shed ten times faster than most people.
Her epidermis is split into thick plates, making her skin look red and scaly.
As a result, Harper has experienced harsh judgment from strangers, who assume she has a contagious disease.
But now, Harper’s unusual looks have landed her a job as a model.
The four-year-old has joined Seattle modelling agency, TCM Models, which her parents hope will help boost her self-belief and ensure she feels comfortable in her own skin.
Her mum, Angie, said: ‘I was not allowed to hold Harper for the first couple of weeks of her life – it was traumatising.
‘At first it was hard when she was born because she didn’t look like a normal baby.
‘She was born with this thick armour because the skin she shed couldn’t escape and couldn’t exfoliate.
‘I had to touch her with gloves while she in an incubator and it was devastating not being able to breastfeed my daughter.
‘I was in shock for the first couple of weeks: it was surreal – very hard and very scary.
‘You want to hold your baby, but it was life or death and we were doing it for her to survive – I was just grateful she was alive.
‘Today, people stare at us more than anything.
‘We had an incident where a lady didn’t want her two kids to interact with Harper because she thought she was contagious.
‘She was really rude. It was really upsetting, but she looked like the silly one as she was telling them to stay away for no reason.
‘But we’ve told Harper being kind is the way to deal with things – she’s come so far because we’ve taught her to be like that.’
Angie bathes Harper four times a day and goes through eight tubs of 415ml moisturiser a week in a never-ending battle to keep her daughter’s skin hydrated to stop her from being painfully itchy.
To keep up with the intensive moisturising regime, Angie orders monthly suitcases of Aquaphor moisturiser costing £155 ($200 USD) and she and project manager hubby Kevin, 41, work from home to constantly bathe their daughter.
She said: ‘Her skin stays good for two hours after bathing and then starts to itch again.
‘We spend a few hundred pounds a month on moisturiser for her, but the most expensive thing is clothes.
‘We get through a tonne of clothes because we have to change her a few times a day because the moisturiser has the consistency of Vaseline.
‘It’s really greasy and it’s hard to get all of the grease out.
‘We have two washing machines: one for our clothes and one for Harper’s clothes and we have to clean the washing machine often because it gets clogged up with grease.’
Despite the expense and effort it takes to keep Harper’s skin in good condition, Angie and Kevin’s round the clock care has so far been a success, with Harper only having been hospitalised once due to her condition in four years.
While she can expect to live a normal life with the condition, she will have to keep up the constant moisturising and exfoliation until the day she dies.
Her parents are now experts at keeping Harper’s skin in prime condition and are even getting Harper ready to start school next year when she turns five.
Angie said: ‘Right now, I think she only has a slight idea how different she is but I think there will come a time when she goes to school when she’ll really know.
‘We’re building her self-confidence before that time comes.
‘At the end of last year Seattle Children’s Hospital hosted a VIP event to celebrate the modelling contract that Harper was awarded and did a photoshoot as part of it, especially for her.
‘There was a runway, a red carpet and music. There was all her care team there from when she born.
‘It was pretty cool for her to have.
‘She loves basketball, singing and dancing – I’m hoping to sign her up for dance lessons soon.
‘She is determined not to let this condition get her down.’
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