Our Mission:
was started
because of the need to get involved & to make a difference in the
lives of people who truly need it.
It originated because of the need
for awareness and help of those who suffer from the disease
Epidermolysis Bullosa - also known as EB.
EB children are known as Butterfly Children, due to the fact that their skin is a fragile as a butterflies wings.
The
Butterfly Fund has since expanded it's hope and is dedicated to helping
families who have a child diagnosed with any serious life altering
disease or event.
100% of the proceeds from
our events & your donation goes directly to family assistance in the
form of financial aid, food, housing, clothing & care.
Absolutely NO salaries are paid.
The Butterfly Fund does not discriminate and anyone and everyone who has a child with a serious illness may inquire with us.
The Facts About EB
*1 out of every 50,000 live births is affected with some type of EB.
*Because EB is
an inherited condition (it cannot be caught), which is passed on
genetically from parents to children, first time parents often do not
know that they are carriers and will have no prior warning that the
child will be affected until birth. At it's mildest, the blistering is
confined to the hands and feet making holding things and walking
extremely painful.
*In more severe forms all
the body is affected and the wounds heal very slowly, giving rise
to scarring, physical deformity and significant disability.
*For
many affected by the condition the blistering is not limited to
the skin, but also affects the inner body linings, such as the mouth and
esophagus. The eating of solids is in these cases almost impossible
and the disposal of the body waste incredibly painful.
*People
with the more severe types of EB also have an exceptionally high risk
of developing skin cancers, shortening their lives by approx. 30-40
years. In it's most severe form, the condition is fatal in infancy.
*There is as yet no effective treatment or cure.
*One in 227 of us has the defective gene that causes EB.
Our Latest Project!!
The Secret Stocking Project
Right among us, there
are children who suffer every single day.
The Butterfly Fund
wants to give these children and their siblings a very merry Christmas this
year and we would love for you to share it with us!
Each stocking
contains a child’s very own wish list !
1.
Pick a stocking
2.
Each stocking contains one item on a child’s Christmas Wish
List.
3.
Buy the gift listed & wrap it. . (If you don’t want to wrap it,
we would gladly do this for you!, but please make sure you put their name on
the gift!.)
Please keep the gift to a “smaller size” if possible..
Extra large items may be too costly to ship.
4.
Put the child’s name on them. Deliver or ship the gifts
back to where you took the stocking from no later than December 10th,
2011!
(or
drop off at 915 Caton Court no later than Dec. 10th!)
5.
The Butterfly Fund will package up your gift/s
and ship them to the children.
6.
Keep the little stocking to hang on your tree
and as a reminder of being so wonderful~
The Butterfly Fund did diligent
research to find these
children. We hand selected only the ones
we felt were truly in need and would benefit most from this project.
These children fight every single day of their lives
just to survive and some have been involved in tragic circumstances.
Most times, their brothers and sisters fight right along with
them. We know some of their “wish List”
items can be pricey, but please realize that some of these children are
severely
handicapped or recovering and sometimes a hand held game is all they
can handle.
Also, many of these children cannot go outside to play like healthy
children.
What a beautiful thing to be able to give them a
beautiful Christmas this year – thank you so much for opening your heart to
care and to make a huge difference.
We cannot do this without your help and appreciate your
help immensely!
If you would like us
to send you a stocking (please let us know if you wish a Girl or a Boy) and we
would love to have you be a part of this wonderful project!
Please use our contact page to let us know~
We are forever grateful to the Companies who support us ...we hope in turn, you will support them.
Kicky Pants
