EB Info
World
The Children with EB are called "Butterfly Children" because in spite of the extreme fragility of their skin (like a butterfly wing), that blisters at the slightest touch, they take on life and light it up with their bravery.
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Simplex
The most common forms of EB are autosomal dominant forms of generalized EB simplex and a localized form of EBS, Weber-Cockayne disease. In generalized EBS, bulla may be widespread but predominate on the extremities. Lesions heal without scarring and although fingernails may shed, they regrow normally. Mucous membranes are generally spared. Blistering tends to lessen by adolescence, and patients have a normal lifespan. Localized EBS, Weber-Cockayne type, often presents in later childhood and adolescence with lesions localized to hands and feet. EBS Dowling-Meara variant, may have severe blistering with significant morbidity and mortality in the first few weeks of life.
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We hope the pictures of these special children will touch your heart.
Kaysie
Kaysie Norton was born in February 1996. She has the Dowling Meara-Simplex form of EB, and lives in Orem, Utah with her older brother Cody and her mom and dad: Christy and Benjamin.
Scooter
Scooter was born on May 2nd, 1997. He has EB-Simplex, and lives with his mother Vanna and Paw Paw.
Gigi
Gabriella Griffith (Gigi), was born April 4th 1995. She has the Dowling Meara-Simplex form of EB and lives in Yardville, New Jersey with her mom (Sylvia) and dad.
Tori
Tori Cameron was born November 12th 1998. She has the Dowling Meara-Simplex form of EB and lives in Gainesville, Florida with her older sister Taylor (5, in the photo with her), and mom and dad: Lorraine and Randy.
Anton
Anton Cujec was born in the spring of 1997. He has the Simplex form of EB and lives in Northern California with mom (Carol) and dad.
Luke
Luke Sinanian was born March 21st 1996. He has the Dowling Meara-Simplex form of EB, and lives in Australia with his older brother and his mom and dad.
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Kendall
Kendall Lee Teague was born May 16th 1996. He has the Simplex form of EB. Kendall enjoys watching Barney, but most of all Bill Gaither videos. He also enjoys coloring and riding his tractor. He lives in Ranburne, Alabama with his mom and dad Duran and his big sister, Katelyn.
Samantha
Samantha Renee Denslaw was born on August 29, 2002. She has EB Simplex Dowling Meara. She lives in Orlando Florida with her parents, Sara and Joe. She has a younger brother, Garrett, who is an EB Angel and a younger sister, Summer, who is EB free. Samantha loves to play with her dolls, sing songs, swim in the pool, hold her new baby sister and play with her dog, Chloe.
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If your child has EB and you would like his or her photo on this page, please email Silvia...THANK YOU!!
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Because you loved me by Celine Dion
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Last Updated: 07/02/2006
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