A Mother's Journey
My heartfelt book, Losing Alex, which I wrote after the loss of my first baby, Alex, who was stillborn at full term, is now officially an AudioBook and I couldn't be more proud and humbled by the amazing voice of Marsha Waterbury, for lending her talents for my story.
If there was one thing I’ve been criticized endlessly for, and for which I’ve stood my ground over and over again, is my need to bandage Nicky. I wrote extensively about it in my book (Butterfly Child), but I feel the need to make my feelings more “public”, so to...
I feel the need to vent this morning, so thank you for letting me do that! OK, here goes. A few months ago I posted a blog on the EB Info World website about the crazy notion that Every EB patient is different. I was inspired to write that blog...
Ever since the photographer started taking photos of Nicky for her/our photo-documentary about living with EB, a lot of questions about his health have surfaced-I will try to answer them here to the best of my ability. 1. Is his condition considered ‘lethal’. Nicky was diagnosed at birth with Epidermolysis...
