Harper Foy, six, is thought to be one of only 20 people in the USA with harlequin ichthyosis (HI) – a condition that makes skin grow 10 times faster than normal.
For Harper, this means spending up to four hours in the shower every day to soothe her skin, which is left red raw from constant shedding.
But her mum, Angie Foy, 44, a real estate broker, of Edmonds, Washington, says the condition has not held her back.
‘There was a time when we were worried that she would never be able to go to school,’ said Angie.
‘There are other people with her condition that we’re aware of who are home schooled, so the fact that Harper has been able to start kindergarten this September is a miracle for us.’
Ichthyosis is a condition that causes widespread and persistent thick, dry, ‘fish-scale’ skin.
Harlequin ichthyosis, which Harper has, is an extremely rare form where the scaling is severe and requires intensive care at birth.
A regular day involves taking an hour-long shower before school and getting picked up at lunchtime for a pitstop at home to take her second shower.
When she returns after school, Harper takes her third shower, then has her fourth just before bedtime.
Angie said: ‘The showers are an inconvenience, but they are essential for Harper to be able to go about her day.
‘Because her skin sheds so much, it becomes itchy and sore, so the showers alleviate a lot of that discomfort.
‘We were worried that she would struggle to make friends, especially because she misses lunch at school to come home and shower, but she is such an outgoing girl.
‘She has lots of friends at school and they are all very conscious of her condition and help her if she needs it.
‘Kids are so resilient, and Harper is no different.’
Angie hopes her daughter will be able to continue studying at school through to her teens.
She said: ‘I’m not sure how it’s going to work as Harper gets older.
‘The schoolwork will naturally get more difficult, so it will be harder for her to miss things to return home for a shower.
‘But we will figure that out when we reach that point.
‘With her attitude, I’m sure Harper will achieve anything she puts her mind to.’
Besides school, Harper’s other big achievement is becoming a child model this year.
Angie said: ‘Harper has such a beautiful sense of humour and personality, you can’t help but love her when you meet her.
‘She’s got this unmatched personality, this sense of fun.
‘She was signed up to a two-year contract with a modelling agency just before the pandemic but, unfortunately, that meant there weren’t any jobs coming in.
‘Now that the world is starting to return to normal, she’s just shot her first modelling campaign.
‘We can’t give too much away, as it hasn’t been released yet, but she can’t wait to pursue her dream of seeing her face on billboards.’
Due to Harper’s condition, she couldn’t have her hair and makeup done as is usual for models – but that didn’t stop her from giving the job her all.
‘Her skin and scalp are too sensitive to get her hair and makeup done, but they had music blasting and Harper was dancing around the room,’ said Angie.
‘Harper loves dancing and music. I always say she is an old soul.
‘The commercial will come out early next year and she is so excited about seeing herself in it.’
Angie is so happy to see her daughter blossoming after a difficult start to life.
She said: ‘The early days were spent doing a lot of research on her condition and hearing different things from doctors on what course of treatment they were going to offer next.
‘It was a very scary and uncertain time for us and now, to be out the other side, feels like a dream.
‘Harper will always be different from other people and her skin will always need special care and attention, but we will cross each bridge as we get to it.
‘I used to worry a lot about how the world would treat a girl like Harper, with her condition.
‘As her mother, I still worry sometimes, but I also have no doubt that she will take the world by storm.
‘She’s a beautiful girl inside and out and she deserves a full life of fun and happiness.’
To follow Harper’s journey, head to her Instagram page.
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