Butterfly Child: A Mother's Journey
Like any mother, Silvia never imagined she would have to to bury her first son, Alex, who was stillborn at full term. After a miscarriage she had Nicky, who was diagnosed at birth with the Recessive Dystrophic form of Epidermolysis Bullosa, an incurable, rare and always-fatal skin disorder. EB is considered an Ultra-Orphan Disease, and at the time of Nicky’s birth there was no research for a cure.
221 Pins284 Followers