Little Evan suffers from Harlequin Ichthyosis, a rare genetic disorder that leaves him susceptible to dehydration and debilitating infections.
At birth, Evan Fasciano looked as if he’d been encased in a crusty layer of plastic wrap.
He suffers from a rare genetic disorder called Harlequin Ichthyosis, which leaves him covered in scales as his skin grows at 10 times the rate of the rest of his body.
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Now 5, the boy is at constant risk of serious skin infections, dehydration and sunstroke. His parents, De De and Joe, spend more than four hours each day bathing and scraping away dead skin from their son’s small body and then coating it in protective lotions.
“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,” his mother told Barcroft TV.
“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,” she said.
Next comes an emollient to moisten his skin and prevent it from tearing or cracking. “He’s usually very giggling and happy” during that treatment, his mom told the news agency.
Evan is especially prone to seizures and sunstroke because he can't sweat. His rapidly growing skin makes his metabolism much faster than normal, so his parents are always encouraging him to eat and drink.
The skin around his eyes is tightly stretched, making it difficult for him to blink. His condition also affects his motor skills and must use a special walker to move around.
But it doesn’t seem to affect his spirit or his lust for life, both of which are on constant display at his Connecticut kindergarten.
“He is pretty much known as the rock star in his school. Everybody waves to him,” his mom told Barcroft. “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,” she said.
“So we’ve been very fortunate.”
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The jubilant child has a younger brother, 19-month-old Chenza, who was born without the genetic disorder and is running and walking with no help.
It doesn’t seem to bother Evan a bit, his mother said.
"When his little brother started walking he said, 'good job,'" she said.
The parents didn’t know there was anything out of the ordinary with their first child until two days before he was born.
“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,” his father said.
When they are out in public, the parents say, sometimes people stare. Or they are rude and unthinking, such as the time a woman stopped De De and accused her of letting her son get horribly sunburned.
“People who 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,” his father said.
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