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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Th
 utterfly
Children™ is a registered trade mark of DEBRA UK |
- Recessive Dystrophic -
Young Adults
(Page 5)
Ashley
Ashley is the first "young man" on this page. He was born on November 14, 1986. He has the Recessive Dystrophic form of EB, the Hallopeau Siemens subtype, and lives in Waipu, New Zealand, with his mom Kathy and dad, and his sister Nadya (with him in the picture) who was born August 25, 1991.
Email Ashley's
mom!
David
David is our second
"young man". He was born on August 8, 1986. He has the Recessive
Dystrophic form of EB and he lives in a small town called Holt in North
Norfolk in the U.K. with Dad Richard, Sister Barbara-Anne born in 1983,
EB free, 3 Cats Lucy, Tabby,and Sally 4 Hamsters Gizmo, Cobweb, Sweet
and Cadbury, 1 Bunny Buzz and 3 Guinea pigs Woody, Sonic and Tails.
David now attends a wonderful School with 140 other disabled children
and loves every minute, he is hoping to become a lawyer, he started college
September 2002 and we all wish him well.
Dona
Dona Reynolds was born January 13, 1988. She has the Recessive Dystrophic form of EB and lives in Florida with her mom Ann.
Dalton
Dalton Sky Legino was born
Octover 5,
1993. Dalton has the Recessive Dystrophic f
orm of
EB, and our family lives in
Haines AK.
Dalton
has a brother and 3 sisters, Jamion, (brother) Symaron, Nancie, & Shena
(sisters) and myself Dezra (Mother, of course).
I am Dezra Legino/Burkes,
and Dalton's Mother. We live 27 miles outside a small town in the
southeast of Alaska called Haines. At the time of Dalton's birth, I was
told he had a rare skin disease known as Recessive Dystrophic
Epidermolysis Bullosa or R.D.E.B.
Dalton is truly one of the greatest lights in
my life and such a blessing as I am sure your son or daughter is to you
and they deserve all the best of what we as Mom's/Dad's/Family etc can
find for them. I am happy to say we just saw Birthday # 14, Oct 5, 2007
and I could not admire him more. The strength he shows me everyday is
amazing. I have often sat and watched him and thought to myself that
someday when I grow up I want to be as good as he already is!!
To every
Mother who is walking this path and to the one's that will come, "Hat's off
to you Mom's! God Bless You!!!!" Please feel free to e-mail us anytime.
We'd love to hear from you.
Daltons Likes & Interests--the human body and how it works, video games, bionicles, art/drawing, hanging out with his little dog Syrus, Medieval role-play, likes to speak Pig Latin (which drives mom nuts) His best friend Steven, Oh yes and most important "Chocolate" (It is a food group ya know Mom LOL) Favorite TV show is "Bleach."
Goals--To become a video game designer & game system designer.
Dalton, I and our family would like to say in closing
here to all of you,
May you always feel the sun on your face and have the
wind at your back....
May the Lord smile down on you and hold you safe and
warm in His faith and love....
And May Grandfather and The Spirits guide you
and smile down on you always....
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
Absence
sharpens love, presence strenghtens it. - Thomas Fuller
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Silvia |Sleeping Angel Web Design
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