Epidermolysis Bullosa Info & Awareness
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…
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…
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;…
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…
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…
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…
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…
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…
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…
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…
