By Aimee Braniff Cree
THIS GIRL is one of just a hundred others known worldwide to be battling this debilitating skin condition and faces being shunned by strangers calling her “contagious” yet she is now modelling professionally for the likes of See Kai Run, Little Stocking Company and Costco.
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Eight year-old Harper Ly Foy from Edmonds Washington State, USA was diagnosed with Harlequin Ichthyosis (HI) at birth, she was on a feeding tube for two years, must receive three one-hour showers or baths a day to keep her hydrated and comfortable. The family goes through a 415ml jar of Aquaphor costing £13 ($16) every two days just to keep her skin moisturised.
Harper is thought to be the 20th living in the U.S. with her condition and the 100th in the world.
Harlequin Ichthyosis is a severe genetic skin condition. Infants with this condition are born prematurely with very hard, thick skin covering most of their bodies.
In Harper’s case, her skin formed large, diamond-shaped plates that were separated by deep cracks.
These skin abnormalities affected the shape of her nose, eyelids, mouth and ears, and limits the movement of her arms and legs.
Restricted movement of the chest can sometimes lead to breathing difficulties and respiratory failure in babies with the condition. Affected infants also have feeding problems.
The skin normally forms a protective barrier between the body and its surrounding environment.
The skin abnormalities associated with Harlequin Ichthyosis disrupt this barrier, making it difficult for affected infants to control water loss, regulate their body temperature.
In Harper’s case she is always cold, and constantly fighting infections.
Infants with HI often experience an excessive loss of fluids, dehydration and develop life-threatening infections in the first few weeks of life.
Following the newborn period, the hard skin plates are shed and the skin develops widespread scales and redness.
Although Harper is a joyous child, she still faces some discrimination because of her condition but she always focuses on the positive and even how to inspire others with her condition, as her mum Angie Foy (47) a real estate broker explains.
“We get lots of stares every time we go out in public,” said her mum.
“There is not a day that goes by that people do not stare at her. It can be very upsetting.
“One mum told her kids to stay away from Harper because she thought Harper was contagious and was sick.
“People think she is sunburned and that I forgot to put sunscreen on her.
“The kindest moment would have to be about how she is treated at school. All her friends, the staff and parents are so welcoming and would do anything for her/us.
“They have our back and treat Harper like any other kid but are also very aware of her needs and make her feel important and special.
“For anyone else with Harlequin Ichthyosis she would just say stay positive and keep your head up.
“We are Harper‘s biggest supporters and we tell her there is nothing she can’t do. We encourage positive self-talk everyday with her.”
Despite the struggle of living with this condition Harper has never let it stop her and she is a confident young girl and has been modelling since she was four.
“I submitted a photo of Harper to a local modelling agency three-and-a-half-years ago with a little biography about Harper and they were intrigued and asked us to come in and meet her,” said mum Angie.
“We came in and they fell in love with her joyous, contagious and happy self and they signed her that day.The rest is history.
“She was born to be in front of the camera. She really is a natural and loves getting her pictures taken.
“You can see it in her portfolio photos. And she has gained so much confidence too.
“Harper has been modelling since she was four and has worked with See Kai Run, Little Stocking Company, Costco and soon to be Hanna Andersson.”
The diagnosis came out of nowhere for Harper‘s family; Angie shares the family’s journey with Harlequin Ichthyosis online and fans are enchanted by how Harper is the happiest child you could meet despite adversity.
“There is no history in the family. Harlequin Ichthyosis is inherited in an autosomal recessive pattern,” said Angie.
“Recessive genetic disorders occur when an individual inherits an abnormal gene from each parent.
“So, now we give Harper three one-hour showers/baths a day to keep her hydrated and comfortable.
“We also use Aquaphor all over her to keep her skin moisturised. We go through a jar of Aquaphor every two to three days.
“Yet she is the most confident, spunky, out-going and life of the party girl.”
Harper has never let her condition damage her self-worth and that would be the advice she passes on as part of her inspirational journey.
“Harper‘s most unique feature is her personality and her compassion for others. She has the biggest heart,” said Angie.
“We hear everyday on her Instagram page how her personality and joyous spirit is an inspiration.
“Appearance does not determine their worth as a human being. We all look different and that is ok.”
ENDS
