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.
When Nicky was born I was told of anemia being an issue with RDEB (Recessive Dystrophic Epidermolysis Bullosa). With this knowledge I gave him Ferrous Sulfate supplements as suggested by his pediatrician thinking that would fix it, but somehow I was unaware of how serious anemia could really become. It...
If there was one question that I was asked more than any other in regards to my son’s condition is why he and others with RDEB look so pale and why they don’t seem to age per se, they always look very young. Even when Nicky was interviewed by FOX11...
I started taking Nicky to CHLA (Children Hospital Los Angeles) in the summer of 2004 when he was 8, following my attending the EB Patient Conference in Palo Alto, where I met a rather eloquent and “well versed in EB” hematologist who opened my eyes on something Nicky was dealing...
