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Epidermolysis Bullosa Info & Awareness

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My Heart Belongs to My Child with EB

05 Mar 2017 by admin

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My heart belongs to my child with EB
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 2020
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About Me

Hi!
I'm Silvia and I am an EB mom.
I was born and grew up in Italy, but now live in Southern California (USA).
I am Mom to 3 boys, 1 in heaven, 2 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 has the Recessive Dystrophic form of Epidermolysis Bullosa. 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!

Worldwide EB Organizations

Children's Skin Disease Foundation
Cure EB
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Debra of America
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The Butterfly Fund

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