Boy, 2, has rare 'scale'-like skin condition that affects 1 in 500,000: 'He’s overcome so much'

WARNING: Article contains graphic images. 

A 2-year-old toddler in the U.K. has a rare skin condition that affects just one in 500,000 people. 

Michal Winter, of Derby, England, was born with thick “plates” of skin on his body due to a condition called harlequin ichthyosis, or HI. These plates — which can complicate breathing and eating and affect the child’s facial features — eventually crack and split, leaving behind red, raw skin. Often, the skin around the eyes and lips is so tight that the eyelids and lips turn inside out, as was the case for Michal.

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“It was a huge shock,” his mother, Anna Ciesielska, 30, said, according to the Daily Mail. “I thought I was going to have a healthy baby. Not even the doctors at first knew what was wrong with him.”

Michal with his mom, Anna.

Michal with his mom, Anna. (Caters News Agency)

“I didn't see him initially when he was born, only a few hours later. When I first saw him I was obviously very upset,” she continued. “I was worried that he would suffer and was in pain. Eventually, one of the doctors broke the news to me about what had happened.”

A genetic skin disorder, HI can put those it affects at “high risk for low body temperature, dehydration, and hypernatremia,” or high levels of sodium in the blood, according to the National Organization for Rare Disorders (NORD).

More specifically, HI affects the skin’s protective barrier between the body and the outside environment.

“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,” states the U.S. National Library of Medicine. “Infants with harlequin ichthyosis often experience an excessive loss of fluids (dehydration) and develop life-threatening infections in the first few weeks of life.”

Michal Winter shortly after he was born.

Michal Winter shortly after he was born. (Caters News Agency)

The toddler requires constant care. Ciesielska moisturizes his sensitive skin every few hours, often using multiple types of creams, according to the Daily Mail. He also takes a moisturizing bath once a day. He cannot go directly in the sun due to fears he could burn. The mom also said she has to ensure her son’s body temperature doesn’t become unbalanced, meaning she has to pay keen attention to whether room temperature is too hot or cold.

“It's a big challenge. You have to keep him at the right temperature all the time,” said Ciesielska. "He suffers from pain — especially when his skin gets dry because with every movement his skin will crack. I have to keep him away from direct sunlight because it can burn his skin, he also gets cold very easily.”

Michal Winter was born with harlequin ichthyosis, a rare condition that causes his skin to shed every day and become red, cracked and dry and puts him at severe risk of infections. 

Michal Winter was born with harlequin ichthyosis, a rare condition that causes his skin to shed every day and become red, cracked and dry and puts him at severe risk of infections.  (Caters News Agency)

She added: “He's always at risk of infection and getting sick. We have to be very careful all of the time.”

In the times that Ciesielska goes into public with her child, many people stare.

“Their jaws drop. Sometimes a person will see a photo of him online and message me saying he looks like a doll," she said. "It really upsets me.”

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Despite his health ailments, the toddler is a “happy and smiley child,” said Ciesielska.

“He's overcome so much and despite the challenges he faces he's such a happy and loving child.”