Say hello to Evan Fasciano, a five-year-old boy from Goshen, Connecticut. Evan was born with a painful medical condition that means he has to undergo daily skin treatments just to ensure his survival. But there’s far more to his story than his illness.
Evan lives with his 33-year-old mom De De, as well as his father, Joe, and his younger brother, Vincenzo. Despite Evan’s illness, the family are doing their best to ensure Evan lives a normal, happy life.
Just 48 hours before Evan was born, his parents were told that he suffers from harlequin ichthyosis, a genetic disease that makes his skin grow at seven times the rate it should. This leaves thick, white scales all over his body.
Evan was delivered nine weeks early and spent the first two months of his life in an intensive care unit. Indeed, for the first two weeks or so, he couldn’t actually open his eyes.
Harlequin ichthyosis is passed on genetically. If parents are carriers, then their children have a one-in-four chance of being affected.
There is currently no known cure. However, while the condition was once almost inevitably fatal, medical advancements and treatments have now made it possible to live with the disease.
For Evan, that means bathing twice a day in order to have his scales and excess skin removed. Without this constant skin management, he’d be at far greater risk of infection.
De De uses her hands to remove most of Evan’s excess skin, finishing off with an exfoliating wash cloth. The most difficult areas to treat are his hands and scalp, where the condition is most severe and the skin is thickest.
After each bath, De De then uses a net to retrieve the leftover skin and ointment products used by Evan. This is simply a logistical necessity of Evan’s illness – the house’s drains could be blocked otherwise.
The main ointment used is Aquaphor, a moisturizer that Evan is completely covered in so that his skin doesn’t dry out. A prescription cream is then applied to the most heavily affected areas.
Evan’s parents praised the youngster’s attitude, given the circumstances, telling the Daily Mail, “He rarely complains about anything. I don’t know if I could say the same if I was in his condition.”
Evan’s life is affected in more ways than having to just take twice-daily baths, however. His motor skills are less developed than other children his age, and he has to use a walking frame in order to get around.
His condition also means he’s always at risk of dehydrating, the effects of which can be devastating. Sunstroke and seizure are just two of the potentially fatal consequences.
De De told the Daily Mail, “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.”
The youngest member of the Fasciano family, Vincenzo, is only a toddler. He doesn’t share Evan’s affliction, but the older brother isn’t jealous – far from it. In fact, when Vincenzo learned to walk, Evan showed pride in his sibling, saying “good job.”
Unfortunately, Evan’s positive attitude has had to go up against derogatory or negative remarks from passers-by. Vindictive or ignorant strangers have called him a “lobster,” and accused De De of letting him get sunburnt.
However, Evan still hasn’t let it get to him. The youngster waves hello to everyone he knows at school, and his parents encourage him to be a role model for other kids who might have their own challenges to deal with.
In fact, Evan is doing great. In May this year, he finished kindergarten, achieving everything that was asked of him – both academically and in terms of fighting his condition.
It’s fitting, then, that Evan’s name derives from the Gaelic for “young warrior.” He may not have had the best start to life, but he’s beaten the odds given to him at birth – when doctors told the Fascianos that Evan’s chances of survival were not high should he suffer from an infection.
Evan’s dad Joe told the Daily Mail, “We both knew he was going to be a strong little guy and that he would make it through anything.” Looking at the incredible progress Evan has made in the first few years of his life, it’s hard to argue with that.