Wantagh Family Raising Awareness of Rare Skin Condition

Lamellar ichthyosis, a rare genetic skin condition that affects one in 500,000 births, has touched a Wantagh family. 

Marc Benedetto, 15, has battled lamellar ichthyosis since the day he was born and today his family is doing their part to spread awareness on the disease. Their advocacy efforts are especially stepped up in May, which has been designated as Ichthyosis Awareness Month. 

When Benedetto was born, his body was encased in a collodion membrane, which took weeks to shed.  For the first six months of his life Marc’s mother, Denise Benedetto, would bathe him three times a day and lather various creams all over his body to help moisturize his skin.

Benedetto has been involved with the Foundation of Ichthyosis and Related Skin Types (FIRST) since Marc was born. FIRST's mission is to educate, inspire, and connect with others about these different skin conditions.

FIRST has a conference every two years that the Benedettos attend that allows them to connect with other parents who have children with similar skin conditions. The event also enables Marc to meet other children and adults who have dealt with lamellar ichthyosis.

Benedetto, who last year was interviewed with his mother on NBC's The Today Show during a segment on lamellar ichthyosis, is now a freshman at . Growing up with lamellar ichthyosis has not been an easy task since when he was younger, other students would often stare at him because of his skin condition.

Benedetto is unable to play sports at a competitive level but he still got involved in his school's athletics program by serving as manager of the Wantagh varsity boys basketball team. He also plays the saxophone in the school's marching band and is a squire at the  in Wantagh.  

This Wednesday will be FIRST Night during the New York Mets game at Citi Field with part of the proceeds from advanced ticket sales benefiting the organization. Before the game, an award will be given to FIRST and the Wantagh High School freshman will take part in the presentation. 

For more information about FIRST, visit the foundation's website. To order tickets for the Met game on May 30, log onto www.mets.com/FIRST.

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