Shania, the Butterfly Child

Shania is a four-year-old girl and suffers from Epidermolyis bullosa. EB is a very rare genetic connective tissue disorder that affects 1 child out of every 20,000 births. EB is actually a group of disorders that share a prominent manifestation of extremely fragile skin that blisters and tears from friction or trauma. I met and photographed Shania and her family for Wir Eltern magazine in June.