By Nathalie Bonney

FIVE-YEAR-OLD Evan Fasciano’s condition causes his skin to grow at ten times the normal rate, leaving him at risk of life-threatening infection

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Videographer / Director: Steven Schloss
Producer: Tom Midlane, Ellie Winstanley
Editor: Jack Stevens

Evan's condition causes his skin to grow ten times faster than the normal rate

Evan, from Goshen, Connecticut, 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 excess skin.

Evan's mother, DeDe, bathes him twice a day to get rid of excess skin

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.

"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 scoop out the large volume of excess skin in order to avoid any plumbing issues. 

After bath time, either De De or dad Joe, 34, will cover Evan in two kinds of cream to moisturise and protect his skin from getting too dry.

Evan was born with Harlequin Ichthyosis, a rare genetic disorder

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 is also constantly at risk of dehydration, suffering from seizures and sunstroke. 

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

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

Evan's younger brother, 19-month-old Chenza, does not suffer from the condition

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 Cenzo, doesn’t suffer from the same condition and recently learnt to walk.

The skin around Evan's eyes make it difficult for him to close them

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.”

Joe and DeDe were warned that Evan may not survive after he was born

Doctors warned the Fascianos that many babies born with Harlequin Ichthyosis don’t survive. 

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 ‘strong 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.”

Chenza and Evan have a really close bond with each other

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.”

Although he suffers from the rare condition Evan still an upbeat and happy child

Although looks and comments from strangers can hurt the family, they refuse to let it defeat them or 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, while on another they mocked Evan, saying he looked like 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.”

For more information on Harlequin Ichthyosis and other severe skin conditions, please visit www.firstskinfoundation.org