Health & Lifestyle

This 8-year-old girl is only the 20th person in the US and 100th in the WORLD with rare skin disease that requires her to take 3 one-hour baths a day

  • WARNING: GRAPHIC CONTENT
  • Harper Foy from Washington was diagnosed at birth with Harlequin Ichthyosis
  • READ MORE: Boy, two, regularly mistaken for a DOLL due to skin condition

An eight-year-old girl is one of just a handful of people in the world with a genetic condition so rare that fewer than seven Americans are born with it every year. 

Harper Foy from Edmonds, Washington, was diagnosed at birth with Harlequin Ichthyosis (HI), one of the rarest genetic skin disorders that makes her skin shed every four hours.

Harper is thought to be just the 20th person in the US and the 100th in the world living with her condition, which causes the skin to grow 10 times faster than normal.

Doctors thought it would kill her — but she has defied the odds and is now modeling professionally for children’s clothing brands like the Little Stocking Company and Costco. 

Harper's mom described her daughter as 'the most confident, spunky, outgoing and life of the party girl'

Harper’s mom described her daughter as ‘the most confident, spunky, outgoing and life of the party girl’

Infants with Harlequin Ichthyosis 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

Infants with Harlequin Ichthyosis 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

However, she constantly needs to keep her skin hydrated and uses a 14oz jar of Aquaphor, a petroleum jelly product that heals and hydrates chapped skin, every two days just to keep her skin moisturized, costing her family nearly $60 a week.

When Harper was born, her doctors had never seen her condition before and warned her parents it was unlikely their daughter would survive.

In kids with Harlequin Ichthyosis, thick scales of skin develop in the womb, stopping circulation in feet and hands upon birth.

When Harper was born, she was rushed to the intensive care unit, and although surgeons were able to remove the plaques, she lost the tips on four of her fingers.

After a month in the hospital fighting an infection, Harper beat the odds and was allowed to go home. Most babies born with the condition do not survive beyond the first week of life.

For two years, she had trouble feeding and eating and needed to get nutrients through a feeding tube.

Now, she must also receive three one-hour showers or baths daily to keep her comfortable. 

Infants with Harlequin Ichthyosis 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. 

Following the newborn period, the hard skin plates are shed, and the skin develops widespread scales and redness. 

These skin abnormalities affected the shape of her nose, eyelids, mouth and ears, and limited the movement of her arms and legs. 

Restricted movement of the chest due to tightness of the skin can sometimes lead to breathing difficulties and respiratory failure in babies with the condition.

Normally, the skin forms a protective barrier between the body and its surrounding environment.

The skin abnormalities associated with Harlequin Ichthyosis, however, disrupt this barrier, making it difficult for affected infants to control water loss and regulate their body temperature.

Ms Foy, 47, a real estate broker, said: 'We get lots of stares every time we go out in public. There is not a day that goes by that people do not stare at her. It can be very upsetting'

Ms Foy, 47, a real estate broker, said: ‘We get lots of stares every time we go out in public. There is not a day that goes by that people do not stare at her. It can be very upsetting’

Harper was on a feeding tube for two years and now must receive three one-hour showers or baths daily to keep her comfortable

Harper was on a feeding tube for two years and now must receive three one-hour showers or baths daily to keep her comfortable

Infants with HI often experience an excessive loss of fluids, dehydration, and develop life-threatening infections in the first few weeks of life. 

For Harper, she is always cold and constantly fighting infections. 

The Foy family was shocked when they received the little girl’s diagnosis. Not only did no one in their family have the condition, but they had never heard of it either.

HI is caused by mutations to a certain gene responsible for making a protein that is necessary for skin cells to develop normally. When the gene mutates, the skin barrier is disrupted. 

It is inherited in an autosomal recessive pattern, which occurs when an individual inherits an abnormal gene from each parent – meaning both Harper’s mom and dad had the gene and passed it onto her.

Although Harper’s mom, Angie Foy, says she is a joyous child, she still faces some discrimination because of her condition.

Ms Foy, 47, a real estate broker, said: ‘We get lots of stares every time we go out in public. There is not a day that goes by that people do not stare at her. It can be very upsetting.

‘One mom told her kids to stay away from Harper because she thought Harper was contagious and was sick.’

Ms Foy added people often think her daughter is sunburned and that she forgot to put sunscreen on her.

Despite the struggle of living with this condition, Harper has never let it stop her. She is a confident young girl and has been modeling since she was four, her mom said. 

‘We are Harper’s biggest supporters and we tell her there is nothing she can’t do. We encourage positive self-talk every day with her. 

‘I submitted a photo of Harper to a local modeling 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 Ms Foy. 

‘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,’ her mom said.

Ms Foy described her daughter as ‘the most confident, spunky, outgoing and life of the party girl.’

She added: ‘Harper’s most unique feature is her personality and her compassion for others. She has the biggest heart. 

‘Appearance does not determine their worth as a human being. We all look different, and that is okay.’


Read More: World News | Entertainment News | Celeb News

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