I came across a reddit page yesterday that deeply disgusted and disturbed me. The title of the post was this: “If I found out my child had that (EB), I would kill them in their sleep.” This is sadly not the first time (and it won’t be my last) where I encountered ignorant comments from people that are just, well, ignorant. As if the lives of children with EB have no value, are unimportant, have no purpose and no place. AsRead More →

Sometime ago I decided not to be angry anymore. I didn’t want to be angry at EB and what it was doing to my son. I was done blowing my lid over things I had no control over. I was tired of being depressed all the time. I was tired of being overwhelmed. I was done with all of it. I wanted to smile. I wanted to be happy. But how could I? I was on a journey. I was alsoRead More →