Category Archives: Personal Stories

What Do You Do?

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What do you do when your child with EB becomes a teenager with EB and starts asking you the really hard questions about life? When my son was small I could gloss over the answers with a positive saying or a humorous comment. Not so as he becomes a young man and wants real answers…

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A Journey Into Motherhood

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From the book “Living with Epidermolysis Bullosa” (ONLY $2.99 for the Kindle!) This story was written in early 2007. Nicky is now nearly 16 (his birthday is in late November). Follow Nicky’s Caringbridge Blog at http://www.caringbridge.org/visit/nickyz (you need to log in to view it, but it’s free). A Journey Into Motherhood  By Silvia C. silviaskingdom.com California, USA…

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A Bandage Tale

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It seems as if all people see, when they come in contact with a child with EB, is gauze. Some wonder if the patient has been into an accident or a fire, others fear it’s contagious: “what happened?” is a common question tossed around, but most just look dumbfounded, not being able to formulate a thought…

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Baby on Board

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By Emily Spurrier From her Blog: Dys-Located This is the sixth and final entry in a blog series on Epidermolysis Bullosa (EB) as part of EB Awareness Week (October 25-31). *************************** Earlier in life, I had envisioned myself having three children. I always said that the first would be a boy, the second, a girl… and the third…

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Further Into Adulthood

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By Emily Spurrier From her Blog: Dys-Located This is the fifth in a blog series on Epidermolysis Bullosa (EB) as part of EB Awareness Week (October 25-31). *************************** Following the demise of my first serious relationship, I figured honesty was still the best policy with those I had dated. With the first potentiality, however, intimacy was not an…

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Into Adulthood

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By Emily Spurrier From her Blog: Dys-Located This is the fourth in a blog series on Epidermolysis Bullosa (EB) as part of EB Awareness Week (October 25-31). *************************** By the time I was fourteen, I was able to walk long distances, but could not do so in shoes. I was in an adapted physical education…

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Gabriel’s Story

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When we found out we were pregnant we were so excited, we had been trying for 6 months. After a typical 9 months of a perfectly normal pregnancy, I gave birth to a beautiful 7lb baby boy which we named Gabriel, after the Angel in God’s Army. Little did we know  what a soldier we…

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The Longest Ten Years of My Life

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By Silvia Corradin From: Special Mommy Chronicles  (Unpublished Column from December 10, 2006) A couple of weeks ago my son turned ten years old and it felt like a gigantic milestone. For the first time in years the image of him in the incubator when he was a baby kept haunting me and my dreams. Why did I…

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Childhood

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By Emily Spurrier From her Blog: Dys-Located This is the third in a blog series on Epidermolysis Bullosa (EB) as part of EB Awareness Week (October 25-31). *************************** My mother turned 28 on October 25, 1974. On that same day, she received a phone call advising her that her one-week-old infant would only live for…

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