Parents Of Baby With Incurable Skin Condition Plan For The Birthday They Didn't Think They'd Celebrate

'It’s a miracle she’s alive.'

22/08/2016 12:51

Warning: This article contains images of a baby in hospital, which some may find graphic.

A baby born with a harrowing skin condition that doctors thought would kill her has defied the odds to make it to her first birthday.

Harper Foy is one of only 13 people and the youngest in the world to have Harlequin Ichthyosis - a genetic illness that causes the skin to grow seven to 10 times faster than normal.

Doctors warned her devastated parents, Angie, 40, and Kevin, 38, it was unlikely their daughter would survive.

“It’s a miracle she’s alive,” said Angie. “We had no idea she had the condition until she was born, we were so shocked.

“When she was born she didn’t look like a human, she looked like an alien. It was very traumatic.”

Caters News Agency
Harper Foy with mum Angie and big brother Jaxon, six.

While in the womb, Harper’s skin tissue built up so that when she was born, she was covered in hard plaques that had stopped the circulation in her feet and hands.

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

“It was a gut wrenching few weeks,” explained Angie, from Edmonds, Washington, US. “Her whole body was covered but thankfully not internally.

“She had to have surgery to cut open the hard plague to release pressure after being in the womb.

“Her foot was purple and the doctors thought it would all go, but we were were able to save it and her right hand but we lost the tops of her finger tips.

“Every day we just didn’t know if she would make it.

“She was on feeding tube and she had infection, and that’s the thing that kills a lot of these kids.”

Caters News Agency
Harper Foy in hospital after she was born.

After a rollercoaster month in hospital fighting an infection, Harper had recovered enough for her parents to bring her home.

There is currently no cure for Harlequin Ichthyosis, so the main focus is keeping Harper comfortable with regular baths and moisturising lotions for her skin.

Her skin needs constant hydration as she sheds layers of skin every four to eight hours.

Although Harper has seen 17 different doctors, there’s a lack of information on the rare condition.

“The children’s hospital is amazing,” said Angie. “They had never seen it before so we were all learning together. We would Google things and they documented the whole process.

“She’s not on any medication. We just use Hydrocortisone.”

The condition is so rare, there was just a 1 in a 1,000,000 chance of both Angie and her husband, Kevin, being carriers.

“We just take it day-by-day,” Angie added. “Her skin is flaky, she is covered in scales head-to-toe.

“Some of these kids end up getting infection in the cracks in their skin, but she hasn’t had any severe cracks so that’s good.

“But she doesn’t sleep very well at all. She will scratch at her self.”

Caters News Agency
Harper Foy at eight months old.

Harper has a team of medics she sees regularly including a nutritionist, an eye doctor and an ear nose and throat doctor.

Angie said: “I fear for her when she is older, you know, not looking like a normal kid.

“She’s going to have problem with her eyes and mobility. She will never be able play contact sports.

“She’s just started sitting up - it’s hard for her. She won’t walk for a year and she’ll need physical therapy.

“She’s getting bigger. She’s gaining weight and eating a ton.”

Harper turns one on 20 September. Her family is currently raising money to buy her a special bath tub just in time for her first birthday - a day they thought they’d never celebrate.

“She’s almost a year, it’s such a big milestone,” she said. “We will have to mark the day with friends and family.

“We’re hoping to get this bath tub for her. That would be a really great gift.”

The family have started a GoFundMe page to raise money for a Microsilk tub, which uses micro-bubbles to provide 70% more oxygen than regular water.

The bath alone, which has to shipped from Japan, costs $6,000 and an additional $15,00 is needed for installation.

“Right now we are giving her four baths a day,” Angie added.

“She loves it. The temperature stays the same so she can sit it in for an hour and it regulates. It’s expensive but she will have it forever.”

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