This page is for the media, booksellers, radio hosts, bloggers, or anyone looking for information about Butterfly Child! Feel free to browse, look around and take what you need! Silvia’ s always happy to talk.
To schedule a media interview or to book a speaking engagement, please email Silvia directly at ebmomma (at) gmail.com or message her via her Facebook Page or Twitter links below:
Silvia Corradin was born and grew up in Ivrea, Italy and arrived in the US in 1982 to go to High School and learn English. She lived with her aunt in New Mexico for a couple of years, after which she attended a trade school in Florida. She married soon thereafter and worked in management for Domino’s Pizza and Babbage’s in Arizona, and it was during this time that her first baby, Alex, was stillborn at full term. After a miscarriage, she then gave birth to her son Nicky, who was diagnosed at birth with a severe form of Epidermolysis Bullosa, called Recessive Dystrophic, Hallopeau Siemens subtype.
Because of the severity of the condition, Silvia had to subside all her career ambitions to stay home and care for her son, which led to devastating financial conditions, due mostly to the insurance companies denial to cover bandages, an essential part of Nicky’s care. After a divorce and a period of being a single mom and all of those struggles, she remarried and had a healthy baby.
While juggling Nicky’s care, her young healthy son and her husband’s health crisis, she worked part time and went to College, and in 2013 she graduated from Antelope Valley College with a double degree in Graphic Design & Digital Imaging. She is an Author, Graphic Artist, Activist, Photographer, Blogger, Webmaster, but first and foremost a Mom. She resides with her family in Lancaster, California.
Silvia Corradin was born and grew up in northern Italy. She holds a double degree for Graphic Design & Digital Imaging and is an Author, Graphic Artist, Activist, Photographer, Blogger, Webmaster but first and foremost a Mom. She resides with her family in Lancaster, California.
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From “Stress Free Living”
From “Parent Paper”
From “About Families”
Being the Parent of a child with an ultra-orphan disorder and how hard it was to look for information to care for him/her
What do we need to know about Recessive Dystrophic Epidermolysis Bullosa or EB in general
When and why did I start the ebinfoworld.com website
Is anyone working on a cure
Q. Why did you want to write a book about your son’s struggles?
A. When Nicky was born and before him, when Alex was stillborn, I felt utterly alone. I craved normalcy. Life, dealing with a child with an orphan disorder is lonely, especially considering how different the various forms of EB are, and how hard it was to find support and Doctors who knew how to properly care for my son. I found out that I had to learn to care for my child through trial and error. Perhaps, by sharing my experiences with the various insurance companies and how I found help, my efforts might help someone.
Q. What was the hardest part about writing the book?
A. Without a doubt re-living all the trials. There were times that I was so upset I had to stop and it took me a week, a month or longer before I could sit down and continue writing. Finding time to write to begin with was difficult as well.
Q. Did you learn anything from writing your book and what was it?
A. I learned a lot about myself in the process of writing this book. In some ways, this book has saved me by helping me put things into prospective. That is the greatest gift.
Q. What makes your book unique?
A. Most memoirs out there steer clear of talking about financial struggles. They also go through great lengths at describing a scene, putting a great effort in finding all kinds of adjectives to convey feelings. When I describe my feelings I try to keep them raw and real. Keeping the book real and true was my ultimate goal.
Q. How did you come up with the title?
A. Children with Epidermolysis Bullosa are called the Butterfly Children because their skin is as fragile as a Butterfly’s wings. Also, I subtitled the book a “journey” rather than a “story” because this is more than a story. It tells the tale of what I did to cope, what I did to have hope, and how I dealt with things in general.
Q. Is there a message in your book that you want readers to grasp?
A. Things are seldom what they seem. On the surface, people may put a happy face, while deep inside they are suffering a great deal.
Q. Who designed the cover?
A. I made the cover in one of my Graphic Design classes while still in College a few years ago!
Q. What are your favorite writers?
A. I don’t really have a favorite writer per se, probably because I’ve been obsessed with Biographies since I can remember, hence I’ve read all sorts of life stories from a variety of different writers.
Q. What books have influenced your life most?
A. I have read some amazing Biographies which have really made me stop and think. One of them was the one of Patty Duke, another was Sally Jesse Raphael’s. The three books that have changed my life and my way of thinking in general are “When bad things happen to good people” by Harold S. Kushner, “Many Lifes, Many Masters” by Brian Weiss and “Journey of Souls” by Michael Newton.
Q. Any future projects?
A. I think I am just happy to have finally finished this one! Nicky’s life, however, is not over. It continues. We have hope in the upcoming clinical trials he’s participating in and hopefully will participate in the future. There is so much more to come. I plan to continue writing Nicky’s story and my journey, but another book is not in the near horizon, it’s several years into the future at best!