Tag Archives: stories

Making Goals and Dreams Come True

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By Bruce Gunn As printed in the Summer 2000 issue of DebRA Currents Bruce Gunn in February 2000 in DisneyWorld during the ‘Have a Heart for EB’ family event. ¬† During my teenage years I knew I was beating the odds given to me at birth. With every birthday I was achieving the impossible. In…

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Jenn’s Story

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By Jennifer Kirk Deprizio Once upon a time. There was this baby girl that was born in 1979 in Wilmington Delaware. She had all of her fingers and toes, but there was something not right with her skin, because she had no skin on her left leg and also no skin on her stomach, and…

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Leo

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By Debbie Kay Hatley In search of a new pair of eyeglasses, I entered a well known optical shop. It wasn’t very busy perhaps a handful of customers, one or two were being fitted with their new prescriptions. I began browsing through the assortment of frames this shop had to offer. In the process of…

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About Eddie Paul

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By Helen Kling We would like everyone who is affected by Recessive Dystrophic Epidermolysis Bullosa to know our son Eddie Paul.¬† This is very much a success story, and hope that by sharing this, it will give others inspiration as he gave to all who knew him. We already had a little girl who was…

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The ABC Method of Wrapping

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By Sheri Coil A bit of History Shortly after Christmas one year, we received a phone call asking us if we were interested in caring for two little boys with a very rare disease that affected their skin. We are caregivers to medically fragile children and like to care for those with ‘challenging’ conditions. The…

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Hand Surgeries

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By Grammy Shirley December 23, 2002 This is information regarding Jennifer Deprizio’s many hand surgeries. Before Jennifer came to live with me in 1997, she had been through many hand surgeries to open the digits and to keep her hands from mittening. Jennifer’s hand before surgery None of them worked and the reason for this…

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Bandaging and Severe RDEB ~My Story~

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by Silvia Corradin My story on how I came to care for my son started, as with all RDEB babies, when he was born. Since he was c-section he came out perfect except for some problem with his mouth. The nurses sucked all his skin out of his mouth when they did the routine suctioning…

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Meet the Parents

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Meet The Parents In the late ’90s and early 2000s this website had a recurring ‘featured’ parent. While we no longer do that, the featured parent and their stories are still available to view. God Bless them all. Happy Mother’s Day! Melissa & Greg Gray Molly Barber Tammy Bradley Mary Jo Burgy Sheri Coil Silvia…

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Meet The Patients

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In the late ’90s and early 2000s this website had a recurring ‘featured’ patient. While we no longer do that, the featured patients and their stories are still available to view. God Bless them all. Brogan Ayre Rachel Barber Christopher Bradley Jeffrey Thomas Bradley EmmyLou Carouthers¬† Lizie Fernandez Jonathan Gionfriddo Sophia Maria Litynski Dennis Parlevliet…

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