GOSHEN - A 3-year-old from Goshen is living with a rare genetic skin disease called Harlequin Ichthyosis.

Evan Fasciano must go through a rigorous skin regimen every day to manage the condition, but his mother De De says he does so with a smile.

De De says Evan's is the most severe of 28 different forms of Ichthyosis. Experts say his condition is so rare that there are only about 25 people in the United States that are known to be living with it.

While many experts say most babies die from the condition, Evan's skin has improved over time thanks to the treatment. But even with the treatment, Evan suffers from a host of medical conditions tied to his disease, such as dehydration and the need to be constantly lubricated.

De De says Evan is also behind other children developmentally, but that he's made great progress with the help of his family and at least a dozen doctors and therapists. She also calls him a very happy, giggly child in spite of his condition.