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.”