Kidowed

In this book you'll find the the struggles, sorrows, and triumphs of the author after she has two children with a rare and universally fatal genetic disease. As she travels through her hellish journey, you will experience unexpected humor, endless love, and learn how strong one family can be while they walk beside her.

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Words: 66,820
Language: English
ISBN: 9781311281890
About Jessica Kenley

Jessica Bonczar Kenley was born in Buffalo, New York and has since lived many places in New York and Pennsylvania. She has been married and divorced twice and has had a total of 5 children. The first two, Ethan and Kaylee, were afflicted with Epidermolysis Bullosa, a rare and under-researched (because of under-funding) children's disease that causes serious and very painful skin wounds. Ethan and Kaylee died from the Junctional-Herlitz subtype of EB in 2005 and 2008, respectively. Jessica wrote Kidowed as a journal while caring for her daughter Kaylee and coping with the medical system in the United States and her own emotional rage and pain. The book, Kidowed, serves as a tool for awareness for EB, which has been called, "The Worst Disease You Never Heard Of."

Videos

DebRA International Congress 2012 PART 1
This is the first part of a speech given at the DebRA International Congress in Toronto, Canada in September of 2012. It was a great honor and privilege to be invited to speak--don't forget to watch PART 2 also!

DebRA International Congress 2012 PART 2
Here is the second part of the speech given in Toronto to the DebRA International Congress!

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