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Teaching The World About Epidermolysis Bullosa

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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.

My Other Books

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Fecal Hoarding and Constipation
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EB and the Eyes
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Life with Andy
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Wrapping Hands & Arms The ABC Way
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The Biggest Influence in My Life
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Being Different
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Shop the EB Awareness Store

Get in Gear! There are always new items in the CafePress gift shop for EB awareness

Every week I add a new item in the Zazzle store as well! Check it out!

Thank You for Visiting!

About Me

My name is Silvia and while I was born and grew up in Italy, I 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!

Listen to Butterfly Talk!

This website proudly produces Butterfly Talk. This podcast airs on BlogTalkRadio. It features education about Epidermolysis Bullosa, support and encouragement, tips and general information regarding advocacy and need for awareness.

Check Out Caregiving Podcasts at Blog Talk Radio with Butterfly Talk on BlogTalkRadio