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 -Page 2
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.
We hope the pictures of these special children will touch your heart.
Amanda
Amanda Williamson was born April 9, 1991. She has the Dowling Meara-Simplex form of EB. Amanda also struggles with Attention Deficit Hyperactivity Disorder and some learning disabilities. She lives with her family in the suburbs north of Atlanta, Georgia. Amanda has an older half-brother, Bradley (age 19), who she adores. He attends college at Monmouth University in New Jersey. She also has a younger sister, Erin (age almost 3). Erin does not have EB but is a Type I Diabetic and has complications with a very rare blood-clotting disorder.
Email Amanda's
mommy Lana!
Kallista
Kallista Ann Thompson was born August 27th, 1999. She has the Simplex form of EB. The important thing with any child is that they are thriving, and are loved. Jerome (big brother) is 9 years old (in 2005) and EB free. They live in Porterville California.
Kallista was the Featured EBkid for Summer 2000.
Click Here to visit her family's website
Geoffrey
Geoffrey Dawkins was born on September 1, 1998. He lives in Grover, N.C. with parents Jeffrey and Angela and his 5 year old sister Kristin. When he was born he was diagnosed with EB Simplex. However, at 2 years of age he was re-diagnosed with a completely different (yet similar) disorder called ED-Ectodermal Dysplasias. ED is a group of genetic disorders which are identified by the absence or deficient function of at least two derivatives of the ectoderm. (i.e. teeth, hair, nails, glands).
Matthew
Matthew Nini was born August 27, 1999. He has the Simplex form of EB and lives in Butler, Pennsylvania, with his loving big sister Kayla, and his parents: Angela (who also has EBS) and David.
Lamees
Lamees Nassir Al-Suwaidi was born on July 25, 1996. She was born with EB Simplex. She lives in Saham, Sultanate of Oman with mom and dad, and brother Ahmed (born in 1990) and sister Shama (born in 1994) which are EB free.
Donovan
Donovan Lang was born in May 2004. He has the Simplex-DM form of EB. Donovan has a sister Hanna that is 2 years older than him that is EB Free. Donovan's mommy Liz has EB as well as his cousin and his grandfather and Uncle (no longer living).
Dillion
Dillion @ 3.5 Years
Dillion @ 3 years old
Hello, my name is Dillion Prater, my birthday is June 5, 1997. I was born with EB Simplex. I like to play football and go fishing. I am also looking forward to meeting someone with EB someday. I live in Kingsport, Tennessee with my mom Patricia, and dad.
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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Last Updated: 07/02/2006
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