DeDe Fasciano is the mother of Evan, an outgoing five-year-old who was born with a condition known as Harlequin Ichthyosis, which causes his body to be covered with thick, scaly skin.
Sufferers of Harlequin Ichthyosis grow skin cells seven times faster than normal skin, and DeDe has to scrub the extra skin off twice a day before it gets too thick and hard.
Evan’s condition also puts him at risk of infection, and his parents have to make sure his skin is constantly moisturized so it doesn’t crack or tear.
Additionally, he has motor issues that have affected his ability to walk.
All this doesn’t stop him from cheering on his younger brother, who doesn’t have the condition. Dede observed, “When his little brother started walking he said ‘good job’. He was very proud of him and never seemed to be jealous.”
Evan has an amazing attitude towards life. His mother, DeDe, said, “He is pretty much known as the rock star in his school. Everybody waves to him.”
Not everybody has been so understanding. People on the street have made fun of him, and other adults have accused DeDe of letting him get terribly sunburned.
His father, Joe, said, “I want Evan to be somebody that people can look up to, somebody that they 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.’” We think these parents have succeeded.
Already, Evan is a great role model for how to handle challenges with grace.