Five year old, Evan Fasciano, was born with Harlequin Ichthyosis, a genetic disorder where skin grows at 10 times the normal rate and leaves scales across the entire body. Both his parents Joe and De De were aware of their son’s condition two days before he was born., and at birth, Evan had scales all over his little body. It became a routine to give Evan baths twice a day so that the scales could be scrubbed off and to also to help prevent infections. “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 thus easier to get off.” Evan’s mom, De De said.
“If we don’t bathe him twice a day then the scales would get much thicker, much faster and it would be harder to rub most of them off.” De De explained. When giving Evan a bath she uses her hands to rub the scales off and sometimes uses an exfoliating clothe.
After his baths he is rubbed with moisturizers and ointments to protect his skin from getting dry. His parents have to also closely monitor him closely for skin dehydrating or overheating since he can’t sweat.
Despite Evan’s odds, he has a great attitude that gets him through his condition. The little boy also has problems with his motor skills and has to be strapped into a special walking frame for him to move around.
Evan’s younger brother does not have the condition, Evan is proud of him and has never shown any signs of being jealous of him. Little Evan has endured a lot through his short life, but that has not stopped him from being a happy child, active and to top it up, he has made a lot of friends.
Even though his parents have problems with the way people stare at him and sometimes make unkind comments, they always try their best to encourage Evan to have a smiley face and be friendly.