About the Book
“Children with EB are called “Butterfly Children” because EB is described as a skin condition in which the skin is so fragile, it is like butterfly wings.”
Like any mother, Silvia never imagined she would have to to bury her first son, Alex, who was stillborn at full term. After a miscarriage she had Nicky, who was diagnosed at birth with the Recessive Dystrophic form of Epidermolysis Bullosa, an incurabile, rare and always-fatal skin disorder. EB is considered an Ultra-Orphan Disease, and at the time of Nicky’s birth there was no research for a cure. In the months and years that passed she had to learn to enjoy each moment, find happiness in the midst of sorrow and try everything she could to keep him alive, often with very few resources, little to no help and even less information available. Burying another child was just not going to happen if she could possibly prevent it.
Butterfly Child is the story of a mother’s journey through grief and incredible challenges. From Insurance Companies refusal to cover the most basic needs for any EB patient to Silvia’s trying to make sense of her situation, from a divorce to a remarriage and another scary pregnancy. Her youngest son, Connor, is 100% healthy and she never, ever, takes it for granted.
WHERE TO BUY
The BEST DEAL for the Paperback is from the Publisher (Lulu). Butterfly Child at Lulu is only $14.97, compared to $24.99 elsewhere!
Here’s the link to purchase the book elsewhere:
The BEST DEAL for the Hardcover version of the Book is from the Publisher (Lulu). Butterfly Child at Lulu is $22.79, compared to a whopping $37.99 on Amazon & Barnes & Noble. I know it’s a ridiculous price, so that’s why I steer everyone toward purchasing my book on paper through the publisher.
From the Publisher:
http://www.amazon.com/Butterfly-Child-Silvia-Corradin-ebook/dp/B00VS3F7CE/ (BEST DEAL!)