(Live Action News) – De De and Joe Fasciano were awaiting the birth of their first child when doctors gave them a difficult diagnosis. They were told that their little boy had Harlequin ichthyosis, a genetic condition that creates hard, thick, scaly skin. Two days after receiving the news, doctors delivered the baby boy via emergency C-section with a team of specialists standing by. His parents named him Evan.

“He was given his name due its Celtic meaning, ‘Young Warrior’, and which he has lived up to from the moment he was born,” his mother wrote on her blog.

Harlequin ichthyosis is the most severe form of ichthyosis and can alter a person’s appearance since their skin is being pulled. It can affect ear development, the limbs, and the joints, and restricted movement can cause respiratory failure. Because of cracks in the skin, a person with the condition is at risk for life-threatening infections. In the past, the condition was considered fatal. But advances in care and knowledge about the condition have helped people survive, and recently a woman with the condition became the first person with Harlequin ichthyosis to give birth. CONTINUE