Boy, 5, has skin that grows 10 TIMES normal rate – leaving him with scales across his body

Five-year-old Evan Fasciano was born with the rare genetic disorder Harlequin Ichthyosis

Five-year-old Evan takes his morning bath, allowing mum De De to scrub off the scales generated by his harlequin ichthyosis(Image: Barcroft Media)

A five-year-old boy is at risk of life-threatening infection because of a condition that causes his skin to grow at ten times the normal rate.

Evan Fasciano was born with Harlequin Ichthyosis, a genetic disorder that leaves him with scales across his entire body.

Suffering from the severest form of the disease, Evan is at constant risk of infection – requiring him to have two baths a day so 33-year-old mum De De can scrub off the scales.

She said: “We’re very strict with Evan’s skin management, so we try to keep him scale-free, and because of that his scales tend to be very thin, so they’re easier to get off.

“If we didn’t bathe him twice a day then the scales would get much thicker, much faster and it would be harder to get off.

Evan plays with his brother Cenzo(Image: Barcroft Media)

“I can use my hands to remove most of it and then we’ll use a wash cloth or exfoliating cloth – his hands and his scalp are the thickest so that’s where it takes a little bit more effort.”

And once his bath is done, De De has to use a net to scoop out the large volume of excess skin because of concerns that the skin and Aquaphor ointment residue could cause issues to the house plumbing.

After bath time, either De De or dad Joe covers Evan in Aquaphor to moisturise and protect his skin from getting too dry, with a second prescription emollient used for areas of particular concern.

De De said: “He needs to be coated with an emollient to keep his skin moist and protect it from cracking or ripping. He’s usually very giggly and happy when he gets Aquaphor.”

Because his skin dries out so quickly, Evan, from Goshen, Connecticut, is also constantly at risk of dehydration, which can potentially cause seizures and sunstroke.

De De said: “Overheating is a very scary health complication. He can’t sweat so he can overheat very easily.

Five-year-old Evan (right) with mum De De(Image: Barcroft Media)

“We’re constantly pushing fluids and food as much as we can just to keep him up on the calorie intake.”

Read more: Man with rare skin disease has ‘tree roots’ growing from his hands

The skin’s exceptionally fast growth rate means Evan’s body burns calories at a much quicker rate than normal.

The skin around Evan’s eyes is so tight, it can be difficult to close his eyes without careful attention.

De De said: “He rarely complains about anything, I don’t know if I could say the same if I was in his condition.”

Evan also has issues with his motor skills, meaning he has to be strapped into a special walking frame to move around.

However, his younger brother, 19-month-old Vincenzo, doesn’t suffer from the same condition and recently learned to walk.

De De said: “When his little brother started walking he said ‘good job’. He was very proud of him and never seemed to be jealous.”

Delivered nine weeks early by emergency caesarean, because of the severity of his condition Evan wasn’t able to leave hospital for a couple of months. De De and Joe first learnt of Evan’s diagnosis just two days before he was born.

Joe said: “When Evan was first born he didn’t look like a baby you would picture. Obviously, his skin was very thick and he didn’t actually open his eyes for the first couple of weeks. He spent two months in newborn ICU.”

Doctors warned the Fascianos that many babies born with Harlequin Ichthyosis may not survive if they contract an infection.

The scales are caused by the rare harlequin ichthyosis disorder(Image: Barcroft Media)

Read more: ‘Snake skin’ disease leaves woman in excruciating pain with daily scrubbing sessions to clear excess

De De said: “I remember looking at him and it was just a relief to see his tummy going up and down.”

The name Evan means ‘young warrior’ and Evan’s parents believe it’s the perfect fit for their brave son.

Joe said: “We both knew he was going to be a strong, little guy and that he would make it through anything.”

Currently there is no cure for Harlequin Ichthyosis, but in spite of everything Evan endures, he remains a lively, happy child, who is incredibly popular at school.

Mum De De has gone into Evan’s class to teach the other children about his condition and Evan is always at the front of the class to help mum out.

De De said: “He is pretty much known as the rock star in his school. Everybody waves to him. He literally doesn’t put his hand down when he is walking in the hallway because he just has to wave and say hello to everybody, so we’ve been very fortunate.”

Evan at the foot of a slide watched over by mother De De(Image: Barcroft Media)

Although looks and comments from strangers can hurt the family, they refuse to let it defeat them or and take away from Evan’s upbeat nature.

Joe said: “There have been incidents when people have made bad comments and you do your best to stay positive.”

On one occasion, while out shopping, a stranger stopped De De and accused her of letting her child get sunburnt. On another they mocked Evan, calling him a lobster.

Joe said: “Sure people stare at Evan. People that don’t know him will do a double take so we’re encouraging him to make sure that he says hello to everyone who does.

“I want Evan to be somebody that people can look up to; somebody that they can say ‘wow he’s got a lot of challenges, his appearance isn’t the same but he can teach people a lot of things.”