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.
|
Th
 utterfly
Children™ is a registered trade mark of DEBRA UK |
Junctional
The generalized form of this is remarkably severe, known as gravis, Herlitz variant. This entity has bullae and large erosions occurring on mucosal surfaces. Even mild trauma can yield extensive erosions, and patients may suffer from frequent infection, sepsis, anemia, dehydration and malnutrition. Involvement may include the respiratory tree, gastrointestinal tract and genitourinary tract. Patients with the Herlitz variant rarely survive beyond their first birthday. Please visit the EB memorial page to meet some of these patients that are no longer with us. The Non-Herlitz variant is non-lethal, and patients survive to adulthood with a normal life span.
Want
to chat with other EB parents and patients?
Click to join EBzone
EBzone is the oldest and largest EB community!
We hope the pictures of these special children will touch your heart.
Christopher and Jeffrey
Christopher Bradley (above) was born on April 3rd, 1993, and his little brother Jeffrey Thomas Bradley (below) was born February 2, 2000.
Christopher was the
Featured EBkid for January 2000.
... and Jeffrey was the Featured EBkid for November/December 2000.
They both have the Junctional Non-Herlitz form of EB and live in Las Cruces, New Mexico along with mom and dad: Tammy and Gary (below) and two older siblings, Joey and Breeana.
Email Christer's and Jeffrey' mommy!
Email Christer's
and Jeffrey's grandma!
Click Here to go to to the Bradley Boys website!
Brittany and Kenny
Brittany Dorman was born November 7th, 1991 and her little brother Kenny was born October 22, 2004. Both have the Junctional form of EB (subtype unknown) and live in Dunkirk, New York along with mom and dad: Cathy and Ken. Their sister Andra is 3.5 years old in this picture taken during Xmas 2004 and is EB free.
Faith
Faith Lynn Smith was born June 11, 2000. She has a black lab named Bo that now lives with her grandma and grandpa in Wisconsin. She lives in Farmington, Minnesota, with mommy and daddy: Terri and Doug Smith.
Jesse
Jesse van Zijp was born August 19, 2002. He lives in The Hague, The Netherlands, with mommy and daddy: Kim and Jack van Zijp.
Xander
Xander Stowe was born March
18, 2001 with Junctional non-herlitz. He lives in Kansas City, Missouri,
with his parents,
Brad & Venus. In the pictures above, on the top left,
Xander after a fall, on the right
at a friend’s Bison Reserve, and a family pic.
Ramsey
Ramsey Kendall White II was born on April 19, 2005. He is believed to have Junctional EB. We live in Florida. He has a sister, Rachael Kinsey White, who is EB free. He has a pet puppy named Roxy. His favorite thing to do is look in a mirror and talk to himself. Parents names are Ramsey and Rebecca.
If your child has EB and you would like his or her photo on this page, please email Silvia...THANK YOU!!
EB Info World fully supports EBAN's mission
Playing:
Because you loved me by Celine Dion
If
you want to be happy for a year, plant a garden. If you want to be happy
for life, plant a tree.
Website maintained and graphics by Princess
Silvia | Sleeping
Angel Creations & Services
Last Updated: July 02, 2006