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Always Hope ~ Epidermolysis Bullosa Awareness

26 Feb 2017 by admin

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Always Hope
Epidermolysis Bullosa Awareness

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Butterfly Child: A Mother’s Journey

Butterfly Child

Follow Silvia's journey from the stillbirth of her first son, followed by a miscarriage, and the first 18 years of her son Nicky's life with Recessive Dystrophic Epidermolysis Bullosa.

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EB Info World was Created on 11/20/1997 - Copyright 2024
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About Me

Hi!
I'm Silvia and I was an EB mom.
I was born and grew up in Italy, but now live in Southern California (USA).
I am Mom to 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 had the Recessive Dystrophic form of Epidermolysis Bullosa. He fought valintly and bravely for 25 years and tragically passed in late 2021. My youngest son, Connor, is 100% healthy, and I never, ever take it for granted.

I started this website when Nicky was just an infant because I could not find any information about EB, so anything I came across I posted for the benefit of other parents and it grew from there. I still run this website (and its FB page) because I never stopped looking for information!
For more about me, you may visit my personal blog.
Thank You for visiting!

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