THE BOOKS

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 an 8-week miscarriage, I had my second son Nicky, who was diagnosed with Recessive Dystrophic form of Epidermolysis Bullosa. My youngest son, Connor, is 100% healthy, and I never, ever take it for granted. I am an author, photographer, graphic artist, webmaster, blogger and more.

Special Mommy Chronicles

 

The “Special Mommy Chronicles” was a column written by Silvia C., the mom of a Special Need child (son suffers from the Recessive Dystrophic form of Epidermolysis Bullosa) which offers insights, stories and struggles that go along in raising special kids.



This book is also available directly from the Publisher and also at Amazon &  Kindle, also at B&N (paperback & Nook Editions) in the iBookstore in iTunes.

Living with Epidermolysis Bullosa

 

Living with Epidermolysis Bullosa has first-hand accounts written by parents and patients who are living or have lived with EB, and was compiled to help people in general understand how it is like to truly live with every form of Epidermolysis Bullosa; from the milder Simplex variants, who are nonetheless not simple to live with, to the more lethal, namely Junctional, whose patients usually succumb to before their first birthday. The stories you will read are from proud parents, or patients and their struggles and how they are coping. Some stories are sad, some are encouraging, and everything in between.

This book is also available directly from the Publisher and also as a paperback at both Amazon & B&N and is also available in the iBookstore in iTunes, and for the Kindle.

Losing Alex [Kindle Edition]

 

Despite the fact that 100 babies are stillborn every day in the United States, losing a baby is still considered an invisible loss. Parents struggle with anger, guilt, and despair, often alone. I wrote Alex’s story (quite lengthy in its own right) as the beginning of the book I am writing about the life of my son Nicholas, who was born 21 months after Alex was stillborn and diagnosed at birth with an incurable and possibly lethal skin disorder called Epidermolysis Bullosa. Grieving parents will find in these pages the solace of knowing they are not alone on this agonizing path, validation of their babies' lives, and perhaps my way of coping and finding meaning in this seemingly meaningless loss, will help too.

Butterfly Child

 

Butterfly Child is the story of a mother’s journey through grief and incredible challenges.  From the stillbirth at full term of her first baby, followed by a miscarriage, to the birth of her son Nicky, diagnosed with Recessive Dystrophic Epidermolysis Bullosa, a rare skin blistering disorder that requires extensive wound care and is considered life threatening. Challenges include 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.
 
 
 

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