MONTGOMERY, Ohio (WKRC) – A Montgomery man featured recently on Local 12, who suffered from so-called butterfly disease, died Thursday night.
Shane DiGiovanna was an outspoken advocate for those with the rare but painful disease, which prevents the skin from growing correctly, starting at infancy.
The disorder affects about one in every 200,000 births nationally and requires constant care and bandaging. DiGiovanna’s mother said bandages alone can cost up to $80,000 a month.
Despite the challenges, DiGiovanna became one of the first people diagnosed with EB to graduate from college…