A Mother's Journey

Hi! I'm Silvia

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.

Life with Epidermolysis Bullosa

January 26, 2017

Frazzled

Please keep Nicky in your prayers… I am a little frazzled this week but I hope I can explain myself better than my mental state wants to allow. One of the nasty side effects of RDEB is that the scarring does not only appear on the outside of the body, but...

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Life with Epidermolysis Bullosa

Frazzled

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