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 3
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.
Hannah
Hannah Enlow was born April 11, 2000. She has the Dowling Meara form of Simplex EB. She lives in Greenville S.C with her momma, her gam-ma, and her two little sisters who are EB free. She goes to school and loves to play. Her favorite color is yellow and she likes to watch "I love Lucy". Hannah is a very strong willed little girl who doesn't let anything get her down. She does the best at everything she does.
Click Here to visit Hanna's MYSPACE page!
Madison & Michael
Madison and Michael Grider were born on January 25th, 1996 (Madison) and December 1st, 1998 (Michael). They have the Simplex, Dowling Meara form of EB. Madison loves to sing and ride her bike, and Mike loves his cars and his fire truck. They also love their Mini Dachshunds Tosha and Teddy and live in sunny Florida with their sister Jessica (1.5 years old as of early 2002) and their parents Jeff and Jenn.
Email Madison
and Michael's mom!
Click Here to visit their family's website
William
William Robert Grizzle was born March 16th, 2002, and was diagnosed with Simplex Dowling Meara. He lives in San Diego, CA with his Mom and Dad, Curt and Jessica Grizzle.
Anna
Anna Dittman was born in April of 2001 to Wendy and Todd Dittman. Anna enjoys art and dance and she loves entertaining her 2 sisters; Madelynn and Thalia. Anna had the honor of serving as a "Champion" for Children's Miracle Network in 2006. She helped increase awareness of Epidermolysis Bullosa and the importance of Children's Hospitals across the country! Anna resides with her family in the Chicago area.
Visit www.nationwidechildrens.com to see a video that chronicles Anna's journey as an infant and toddler with EBS-DM (good clinical pictures). Once you enter the site click on the "Giving" heading and scroll down to "Patient Stories". Click on "Meet Anna" to view her story.
Benjamin
Benjamin Pyles was born November 19th 1988. He has the Simplex form of EB. He's been playing the violin for 5 years ans sax for 2 years in band. Benjamin was also born with atopic dermatitis and has many allergies do to this desease, he is a wonderful, sweet, courages young man. he has endured pain and has been popping his own blisters since the tender age of 2 he has had as many as 33 on each foot frequently 1or 2 on top of the other, his hands, feet and some parts of his arms and legs are scarred and aged. He lives in Gresham, Oregon with his mom and dad.
Alicia
Alicia Janine Yates was born is July 16 1999. She has a form of EB is Simplex, subtype unknown (most resembles dowling meara). Her family lives in Ohio and her parents are Nick and Connie Danell Yates. Her sibling is one older sister, Kayla. Her cat's name is Arlo. She loves to dress up and dance like a ballerina and her favorite toys are the little Kelly dolls.
Christina
Our hero, Christina Minkey was born September 29, 1999 and has EB Simplex subtype yet unknown. She lives in Northern California with parents Jim and Lesley and little sister Elena (who is 9 months younger). She adores her sister as well as her two kitty cats Obadiah and Leah. She has taken on the challenges of her many blisters with a strong spirit and delightful sense of humor.
Kai
Kai Oliver Mascord was born on June 14th, 2003. He has no siblings. He lives with his family in Wolverhampton, United Kingdom. Kai's mom is Melanie Mascord, Kai has Simplex EB. Mom doesn't know a lot about EB, Kai has regular visits to doctors and hospitals. Kai's mom is interested in hearing from other families with children with the same condition as Kai so they can share their stories and tips. Melanie is a single mom to Kai which can sometimes be stressful but she loves him to bits. Kai is a lovely, happy, playful boy.
If your child has EB and you would like his or her photo on this page, please email Silvia...THANK YOU!!
Playing:
Because you loved me by Celine Dion
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