Two days before his birth, Evan Fasciano’s parents got some terrible news. Doctors had discovered that Evan was afflicted with a rare and terrible skin disorder that would likely claim his life.
But they weren’t ready to give up, and neither was Evan, and when you see him now, you simply won’t believe your eyes.
When Evan Fasciano was born, his parents were shocked. His body was covered in tough scales, and his eyes were covered in so much crust that he was unable to open them. He was effectively blind for weeks and had to stay in the ICU for two months.
Evan was born with ichthyosis, a skin disorder that causes his skin to grow so quickly that it creates scales that stick together and prevent proper movement. Doctors explained that unless the scales were removed quickly, baby Evan was unlikely to live long.
But Evan’s name means “the fighter,” and that is certainly what he turned out to be. He just turned five, and he fights for his life every single day with the help of his parents. His mom, De De, bathes him twice a day so that she may soften and remove his scales. De De says that Evan rarely complains during the process.
Evans also needs to eat a great deal, as the process of growing so much skin burns calories quickly. It can be difficult for him to consume enough calories to be healthy.
He is able to communicate and has proven to be quite intelligent, even if he struggles with his motor skills. He crawls around the house with ease, though, and was thrilled to see his 19 month old brother, Vincenzo, learn to walk himself!
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