Butterfly Talk

Jessica Kenley was born in 1981 in Buffalo, NY. She lost two of her children, Ethan Tyler and Kaylee Marie, to the Junctional-Herlitz subtype of Epidermolysis Bullosa during their infancy. She is a licensed veterinary technician and has since had 3 healthy children. She wrote the book "Kidowed" to describe the struggles, sorrows, and triumphs of her first two children's painful and short lives. In her second book, "Walking the Mile", she attempts to resume her life with a new husband, a new town, and a new baby. She describes her journey through the struggles with undiagnosed and stigmatized mental and physical illness, resulting in addiction, alcoholism, and the abandonment of her family and society as a whole. And finally--the light at the end of the tunnel.

The Host of the Podcast Silvia Corradin talks about her book "Butterfly Child: A Mother's Journey", her other books, websites etc.

Just before her 30th Birthday, Silvia found out she was pregnant with her first baby, which was stillborn at full term on March 1, 1995. After a miscarriage she had Nicky, diagnosed shortly after birth with Recessive Dystrophic Epidermolysis Bullosa. Nicky is 18 now and the struggles and pain he's been through are immense. Does she dare hope for a future for him? Yes. But it's not easy.

http://www.butterflychildamothersjourney.com

Special guest Derra Nicole Sabo is 30 years old and lives in Apple Valley, California. She was diagnosed at birth with Recessive Dystrophic Epidermolysis Bullosa. She loves to write and has published a few books about her life. Join us as she talks about her life, living with EB!

In her own words: "I may have bandages on my legs and occasionally on my arms, my hands may look like fists and it may take an extra dose of creativity when accomplishing certain tasks, but I wouldn’t trade my life for anything. I love my family and friends, I love cooking in the kitchen, dancing, music, movies. I am a writer and an artist. I am strong, secure and not afraid to stand up for what i believe in"

Special Guest Heather Fullmer talks to us today about being an EB mom and shares about what it means to her to be one of the founders of the EB Research Partnership. http://ebresearch.org/

Special Guest Lorraine Montello talks to us today about being an EB mom and shares details about her business venture, Montello Fine Foods, which she started with her son Garrett.

https://www.montellooliveoil.com/

A quick podcast to test the waters, explaining why I decided to start this and what Epidermolysis Bullosa is in general and what my son goes through on a daily basis. My son Nicky has the Recessive Dystrophic form of EB. This blog talk radio podcast will feature guests and will be a permanent part of the ebinfoworld.com website. I start this podcast in conjuction with the upcoming release of my book "Butterfly Child", my journey from the stillbirth of my first son Alex, followed by a miscarriage and the birth of my son Nicky and what life has been like for him and us for the past 20 years.