I
have found tons of great items on eBay for my son, anything from (new) wound
care supplies, to Emu Oil at a fraction of the original cost. Click below and
see what you may find! You can also use eBay to sell your used stuff you
no longer need for some extra cash.
Thutterfly
Children™ is a registered trade mark of DEBRA
UK
"I
want the whole world to see, not the difference,
but the sameness of children with disabilities.
Thank you for seeing children through the eyes of acceptance."
Cynthia
Kidder
The Butterfly Children
are sufferers of Epidermolysis Bullosa. They have skin as fragile
as a butterfly’s wing which can blister at the slightest touch
— even
from a mother’s cuddle. Normal
day-to-day life can cause constant pain and scarring, which, in
the worse forms, leads to eventual disfigurement, disability and
often early death.
An estimated 10,000 people in the U.S. have some form of the condition.
This of course doesn’t include those who have the worst form
of EB, because they invariably die in infancy.
You can’t catch EB; you are born with it.
Epidermolysis
Bullosa, also known as simply "EB", is a term
for a group of inherited disorders of skin manifested by fragility
and the formation of blisters at site of mechanical trauma. It is
caused by defects in any one of the genes that code for critical
skin proteins. A number of different types of proteins, including
collagen and keratin, are woven together to give skin its remarkably
tough, yet flexible, properties. When any one of these proteins
is bad, the weave is no good and the skin can literally fall apart
with the slightest touch, causing painful blistering.
There is a great
range of severity depending of the type of EB, from occasional blisters
that cause no appreciable disability to widespread blister formation
with severe scarring, marked erosions, and contractures. In severe
forms, lesions occur on any mucosal surface, including the mouth,
gastrointestinal tract, and trachea, causing malnutrition, anemia
and respiratory compromise.
EB
is rare. One thing to describe its rareness is that a doctor or a
nurse can be working a lifetime and never bump into this condition.
With modern medical care, some with the medium to worse kinds of EB
can live into their thirties. Unfortunately, by this age most will
succumb to a particularly aggressive skin cancer (SCC: Squamous Cell Carcinoma)
that is somehow touched off by EB. While SCC is notably a very slow
moving cancer, on EB patients it is instead a very fast cancer.
There are three basic
forms of EB:
~EB simplex is the most superficial type, with splitting of the epidermis
within the basal layer.
~Junctional EB has splitting within the lamina lucida, at the junction
of the epidermis and dermis.
~Dystrophic EB has a split within the dermis below the lamina
densa.
Because of the dermal placement of the blister, lesions heal with
scarring.
Upon injury, the
simplex's wound is not as deep and severe as the dystrophic's one,
but it is more easily obtained.
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.
Don't
Be Afraid To Hug Me
Don't be afraid
to hug me.
Don't be afraid to kiss me.
Don't be afraid to snuggle with me as we sit and watch TV.
Don't be afraid to give me "high five".
Don't be afraid to tickle me silly.
Don't be afraid to shake my hand whenever you greet me.
Don't be afraid to have fun with me.
Party and dance and watch movies.
Don't be afraid to ask me questions
or be curious about my skin.
Don't be afraid to get to know the person within.
Don't be afraid to treat me as any other teen.
Don't be afraid to spread the truth about my disease.
So you can give me hugs and kisses,
shake my hand as we meet,
party and dance with me,
and tickle my feet.
You can ask me questions
and get to know me
and tell others about my disease.
But there's just one rule to follow,
And that's be as gentle as can be
as you give me hugs
full of love and not pity.
Written By
Cristina Perez in memory of Jennifer Johnson.
The
Children
Children with EB
live a tortured existence of daily pain and, in the more severe forms,
such as Recessive Dystrophic, frequent medical procedures, with little
hope of recovery or normalcy. Yet we must always remind ourselves
that inside the disfigured body lives a child who wants to enjoy all
the things in life a normal child enjoys, to play, to laugh, and to
learn, a child with all the potential and need for joy of a normal
child.
Photos
The photos of these
brave children and adults (91 at the last update) are grouped together
depending on the form of EB they have (except for the adult page).
A description of each form of EB is listed under each page and/or
picture:
If you or your
child has EB and you would like his or her photo in these pages, please
email
Silvia with a picture of your child and the following information:
Full name, birth date, form of EB, where the family lives, and names
of siblings (if any) and parents, along with any comment you would
like to add. Your email address will be automatically added unless
you specify not to.
Thank you!
utterfly
Children™ is a registered trade mark of 
Normal
day-to-day life can cause constant pain and scarring, which, in
the worse forms, leads to eventual disfigurement, disability and
often early death.
EB
is rare. One thing to describe its rareness is that a doctor or a
nurse can be working a lifetime and never bump into this condition.
With modern medical care, some with the medium to worse kinds of EB
can live into their thirties. Unfortunately, by this age most will
succumb to a particularly aggressive skin cancer (SCC: Squamous Cell Carcinoma)
that is somehow touched off by EB. While SCC is notably a very slow
moving cancer, on EB patients it is instead a very fast cancer.
2/5/2008
