The Boy Whose Skin Grows Too Fast

DEDE FASCIANO: Harlequin Ichthyosis is a severe skin disorder. It is a genetic disorder that’s
inherited at birth. For Evan, it is the most severe form of Ichthyosis. Dede: Time to cozy snuggly? Evan: Yeah and put my sweater!
Dede: You want to put your sweater on? JOE FASCIANO: It is a condition that affects his skin and it makes it very, very thick and scaly. DEDE FASCIANO: Ever since Evan has been born
we, you know, knew right away that there was no cure and there were only treatments. COMM: Delivered nine weeks early, Evan Fasciano spent his first 58 days in hospital. DEDE FASCIANO: Evan was diagnosed two days prior to birth. We have never heard of Ichthyosis
prior to hearing it from the doctors before he was born. It was hard because we really
didn’t know what to expect and it was scary just hearing the information that was available
at that time, in 2010. Hearing that a lot of babies might not survive, I remember looking
at him though he was covered up, it was just a relief for me to see his tummy go up and
down. COMM: Evan is the only one in his family who suffers from Ichthyosis. COMM: There’s no cure for the condition, so Evan follows a strict regime to manage
its symptoms. DEDE FASCIANO: The bathing process is really important for people with Ichthyosis because
their skin is growing ten times faster than the average person. We bathe him because we
need to exfoliate his skin; we need to make sure his skin stays clean, since his skin
is at risk of infection, everything has to be very clean and sanitary. The amount of
skin that comes off is absolutely crazy! Since his skin is so severely dry, he needs to be
coated with an emollient to prevent it from cracking or ripping. And it’s a, more of
a protective barrier. He’s usually very happy and giggly when he gets Aquaphor. Okay,
arms up high in the sky! Okay, can you stay still please? You’re being silly. He can’t
sweat so he can overheat very easily, he can go into heat stroke very easily, he can
have seizures. We’re constantly pushing fluids, drinks, food as much as we can. Just
to keep him up on the calorie intake. We were always a little bit nervous that we would
have to get a feeding tube just because of the infection risk with surgery. He rarely
complains about anything! COMM: Evan’s condition can draw unwanted attention. JOE FASCIANO: There’s been instances where people have made bad comments and you do your
best to stay positive. DEDE FASCIANO: We would never want Evan to
feel uncomfortable going out in public. He does sometimes seem to be a little shy when
he notices people staring at him, I don’t want him to react negatively. I would rather
live a positive lifestyle and not let some stranger who was being rude ruin his day. COMM: Evan is happily settled in pre-school. DEDE FASCIANO: He’s pretty much known as
the rockstar in his school. Everybody waves to him; he literally doesn’t put his hand
down when he’s walking in the hallway. I’ve gone to his school quite a few times to teach
the students about Ichthyosis, just that they are curious about what’s going on with his
skin and every time I go in there he is right up in the front row, you know, helping me
teach the other students. COMM: And Evan’s parents hope that he will continue to lead a happy life. JOE FASCIANO: I want Evan to be somebody that people can look up to. Somebody that people
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 and he can differently be a big positive influence for a lot of people
with similar disorders.”


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