Meet my 4th baby: Fragile Wings, Fierce Hearts 🦋 When Mackenzie was born, we were told she had a horrific disorder (Recessive Dystrophic Epidermolysis Bullosa), with a life full of pain ahead of her. But we were also told there was hope. That research had recently facilitated 2 new FDA approved treatments for EB (and 2 soon became 3 within a few months of Kenzie’s life!). That research was nearing the science behind what will likely become a cure. I understand that we are years away from a legi

Rowan sings Anthems for a Seventeen Year‐Old Girl with Broken Social Scene during the @Matter of Time Toronto screening afterparty 🦋🩷 #matteroftimenetflix