Little Evan Fasciano’s parents from Goshen, Connecticut were
shocked in 2011 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.
Evan has a 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.
Evan recently 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 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!
Evan recently started going to school. His mom explained to
his classmates why Evan looks a little different than the other kids.
Thankfully his new friends reacted in the best possible way: He is the class
“rockstar” and is treated with kindness by the other children.
There is always someone who isn’t filled with kindness,
however. Evan has been called “lobster” because of his red skin and baldness.
But this family is brushing it off; they love Evan as he is and know how
bravely he faces each and every day.
Even though his risk of infection is great, Evan’s parents
want to make sure their son has the most normal life possible. They aren’t
hiding him away or keeping him from things kids his age love.
At the playground and at home, Evan and his brother run
wild; it’s beautiful to see how gentle they are with one another.
You can
watch a video of Evan’s story here:
As long as Evan has this wonderful family who is dedicated
to his care, he’ll overcome the next hurdles. He deserves it. And though he
might meet some people down the road who are cruel to him from a lack of
compassion, he’ll know this: His family will be there for him.
