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.

Thutterfly Children™ is a registered trade mark of DEBRA UK

Dominant Dystrophic

Please see the "Recessive Dystrophic" for an explanation of this form.

We hope the pictures of these special children will touch your heart.

Sebastian

Sebastain Micheal Hinkle was born on April 25, 1992 with mild dominant dystrophic EB. He is a very active child loves to play out side and his video games, though he would love to play sports, but is limited to what he can do. This site has really helped him, he always felt out of place and he was the only one who had this disorder though I (mom), have EB also, that never help him, but now that he knows that other children his age have EB, I think it has helped him alot. Thank you so much for doing this wonderful site. Sebastian has two siblings, an older sister (13) and brother (9) your all in prayers thanks.

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Taylor

Taylor Emmalee Marcoullier was born December 11, 1996. Taylor is 6 years old now. She attends Kindergarten, is involved with Daisy Girl Scouts, and takes Ballet classes. We live in Palmyra, PA. Her brother, Tyler (pictured below) is EB free, he is 10 months old (as of March 2003) and does nothing but giggle... even in his sleep. Taylor has the Dominant Dystrophic form EB.

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Jesse

Jesse Vensel was born in March 1995. He has the Dominant Dystrophic form EB and lives in Houston, Texas, along with mom and dad: Christina and Brian. Jesse's dad also has EB, a more severe form, but it is not certain if he has a Recessive or a Dominant case of Dystrophic EB.
Here's a current photo  of Jesse, along with his dad.  Jesse is active in golf and even  basketball. Basketball worries me, but he seems to be able to "dodge the  bullets", so to speak. I think what worries me most is his tendencies to hide his blisters until he gets home.  He has always been wary of people  knowing about his condition and as such, he tends to wear long sleeve shirts and  long shorts so that his scars/bandages are fairly hidden.  For basketball,  he wears kneepads and no one seems to question it, so he is okay.  AND he  really enjoys playing.  Again, he does seem to dodge the bullet well enough  that he seldom gets booboos playing so that is a good thing.  He'll be 13 in March 2008 and is currently in junior high.

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Katie

This is Katie, she was born on February 28, 2004. Katie has the dominant dystrophic form of EB. She loves her mommy, daddy, and George the dog. Katie likes to play on her bean bag, going for walks in the stroller, and singing into Daddy's microphone. She enjoys watching Blues Clues while Mommy bandages her boo boos. God Bless!!.

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Jonas

Jonas Matson was born in February 1998. He has the Dominant Dystrophic form of EB and lives in Vancouver, Washington along with mom and dad: Donny and Kim, four older siblings and one younger one, as pictured below in this picture from Xmas '99.

From left to right, top to bottom, Jase (7 weeks), mommy Kim, Jonas (1 3/4 years old), daddy Donny, Stacia (5 years old), Leiah (6.5 years old), Nissa (3 3/4 years old) and Lason (7.5 years old).

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Anne~Marie & Heather

Anne-Marie Tanksley Howell (on the left) was born on May 26th, 1999. Heather Raine Tanksley (on the right) was born October 22, 2002. In this picture she was 5 days old, at birth she weighed 7lb 10.4oz and was 19 inches long. Both girls  have the Dominant Dystrophic form of EB and live with their mommy Misty.

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A.J., Veronica & Mike