Tag Archives: stories

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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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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The Devastation that is EB

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By Denise Ippolito Dandurand As the mother of a child with EB, I can tell you first hand what this disease does to people. My son, Hunter Dandurand, is 2 years old and has Recessive Dystrophic Epidermolysis Bullosa (RDEB). Being my first, and only child, I wasn’t sure how parenting was going to be, but…

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The Biggest Influence in My Life

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By Heather Wagner Brittany is the girl farthest left in the picture and I am the farthest right. The girl in the middle is our youngest sis Allison ——————————————————————————–      The biggest influence in my life is my sister, Brittany. My sister is three years younger than me, but she teaches me more about life…

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Jonathan’s Smile

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By Brenda Gionfriddo The day was May 11, 1999 I was excited yet scared for what was to come. I was scheduled to go into the Hospital at 7:00 p.m. to be induced. I was two weeks over due and ready. In only five short hours the said ” It’s a boy”. I was overjoyed;…

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Life with Andy

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By Mary Jo Burgy December 30, 1993 was the day we had been longing for. This was to be the birthday of our twin boys. We were as excited as we were scared. I had the “perfect” pregnancy. I gave up all the bad stuff and ate all the good stuff. All the tests indicated…

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Remembering Ryan

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By Jen O’Neil I got some good gossip the other day, and I got that excited feeling in the pit of my stomach and all I could thing of was…Oh man wait till Ryan hears this! Then it hit me, and the excited feeling in the pit of my stomach turned to lead. And I…

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