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Butterfly Child is the story of a mothers 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 Silvias trying to make sense of her situation, from a divorce to a remarriage and another scary pregnancy. Her youngest son, Connor, is...

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...

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...