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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
Debra International
Debra of America
EB Research Partnership
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The Butterfly Fund

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