Epidermolysis Bullosa: Great Pain and Gigantic Love

Patient Stories with Grey Genetics

Silvia’s son Nicky was born with a devastating condition called Epidermolysis Bullosa (EB). On her websites and in her books, she describes his skin as fragile as a butterfly’s wing which can blister at the slightest touch, causing pain and scarring and leading to disfigurement and disability. Today Nicky is 24 years old. Silvia shares how her perspective on Nicky’s diagnosis was shaped by her previous experience of delivering a stillborn son at full term. She tells her story of caring for and advocating for a child with a rare disease, building a supportive community online in the early days of the internet, and recent efforts that give her more hope for the needed cure for EB.

Links and Resources

EB Info World

Silvia’s blog

Butterfly Talk: Silvia’s YouTube channel where she talks with other moms about coping and celebrating their kids with EB

Books by Silvia Corradin:

Butterfly Child: A Mother’s Journey: Silvia’s book about Nicky, his life with EB, and her journey as his mother

Living With Epidermolysis Bullosa: A compilation of stories written by families touched by EB

Losing Alex: The Night I Held An Angel: Silvia’s story of her experience with her first son Alex, who was stillborn at full term.

Special Mommy Chronicles: A compilation of columns written by Silvia, offering insights, stories and struggles that go along with raising special kids.

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