Genetic condition causes skin layers to shed every 4 to 8 hours
"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.”
When doctors discovered little Harper’s condition, they weren’t optimistic that the infant would survive. They even warned parents Angie and Kevin to prepare for the worst.
According to a Mirror report, Harper Foy is one of only 13 people and the youngest in the world with a condition called Harlequin Ichthyosis—a genetic illness causing the skin to grow seven to 10 times faster than normal.
“While in the womb, Harper’s skin tissue built up so that when the tot was born, she was covered in hard plaques that had stopped the circulation in her feet and hands,” the report said.
Despite surgeons’ efforts to remove these plaques, Harper lost the tips of on her four fingers.
“We had no idea she had the condition until she was born, we were so shocked,” the mother from Edmonds, Washington said.
“When she was born she didn’t look like a human, she looked like an alien. It was very traumatic.”
Even though the odds were stacked against her, the little fighter continues to surprise everyone; after spending a month in the hospital battling an infection, her mother was able to bring her home.
Having no cure for her condition, Harper needs constant attention: her skin needs to be hydrated and moisturized because she sheds layers of skin every four to eight hours.
“I fear for her when she is older, you know, not looking like a normal kid,” Angie confessed. “She’s going to have problem with her eyes and mobility. She will never be able play contact sports but that’s the most part.”
Harper is turning one on September 20th.
Find out more about Harlequin Ichthtosis on the next page
What is Harlequin Ichthyosis?
Harlequin Ichthyosis is a severe genetic disorder that mainly affects the skin, says Genetics Home Reference. Those who have the condition are born with very hard, thick skin covering most of their bodies.
The skin forms large, diamond-shaped plates that are separated by deep cracks (fissures).
Not only that, these skin abnormalities affect the shape of the eyelids, nose, mouth, and ears, and limit movement of the arms and legs.
Restricted movement of the chest can then lead to breathing difficulties and respiratory failure.
“The skin normally forms a protective barrier between the body and its surrounding environment,” GHR says.
“The skin abnormalities associated with harlequin ichthyosis disrupt this barrier, making it more difficult for affected infants to control water loss, regulate their body temperature, and fight infections.”
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