Little Evan Fasciano’s was born in 2011 and he is from Goshen, Connecticut. But unfortunately, his parents were shocked when they first saw their baby boy. He was barely recognizable as a human infant. His delicate body was covered in hardened scales. His eyes were so crusted over that he couldn’t open them for weeks. He spent two months in the ICU receiving special care.
From his birth Evan was suffering from a rare skin disease called ichthyosis. His skin grows so fast that it builds scales that stick together and constrict his movements. If these skin scales aren’t regularly removed, Evan will eventually die from the illness. Doctors warned Evan’s parents that he probably wouldn’t live long. His disease is considered terminal and incurable, but they didn’t know the fighting spirit of this family.
Recently, Evan turned 5 years old. The name “Evan” means “the fighter” and he couldn’t have been given a more appropriate name. Since arriving in this world, Evan has fought every day to live. His mother De bathes him twice a day, softening his scales and making them easier to remove. “He hardly complains,” she said, moved.
Evan’s parents have to make sure their son eats enough. Such fast-growing skin burns through so many calories that it’s hard to make sure he’s getting enough nourishment.
Evan can speak and is a clever young thing, but his motor skills are severely affected by his skin. He’s unable to walk, but he is a master crawler and finds his way around the house on all fours. When his little brother, 19-month-old Vincenzo, learned to walk, Evan wasn’t the least bit jealous – he was thrilled and proud of his brother!