I am the mother of 3 boys, 2 in heaven, 1 on earth. My first son Alex (whose demise is most likely EB related) was stillborn at full term. After a miscarriage, I had my second son Nicky, who was born with the Recessive Dystrophic form of Epidermolysis Bullosa. He died in late 2021. My youngest son, Connor, is 100% healthy, and I never, ever take it for granted. I am an author, photographer, graphic artist, webmaster, blogger and more. I hope my life and my struggles through grief and special need parenting inspire you to enjoy each moment.
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.
Thank you Marsha! Click Below to see it or purchase it! Prices for the book start at only $2.99!
As new clinical trials have become available once he was a teenager, I felt it was important to question the usefulness of each treatment. Sometimes the treatment causes horrible suffering and offers only a brief or limited relief. And that’s IF they work. It’s extremely important to distinguish between a genuinely useful treatment and one that curelly creates the illusion of hope.
Once an area gets wounded, it’s much easier to wound again, the more it gets wounded, the more fragile it becomes.
Only through awareness we can ever hope for a cure.
The day just does not seem complete unless I either step on a piece of Mepilex or I find one on the floor somewhere, usually yucky, BTW. File under “Life of an EB Mom”.
I echo the words of Cheryl Strayed from the movie WILD: “I want a fucking miracle”.
A friend is not a friend if they feel the need to constantly insult your beliefs. Respect my beliefs and I will respect yours. Simple courtesy is so lacking these days…