Wednesday, May 30, 2012

EB Awareness and a sweet friend Ellie

a couple of years ago i was blessed to meet a very special little girl. her name is ellie. she is one smart cookie! although cookies are a food she has to be careful when she eats. you see, ellie has the worst most painful and most terrible condition that you have never heard of: epidermolysis bullosa, or EB for short. EB is a genetic condition that means a persons skin is missing the stuff that makes it stay on the body. even the gentle touch of ellie's parents arms around her to give her a hug can cause terrible blisters and her skin to sheer off. she lives with pain - every.single.hour. please meet sweet ellie. please donate to find a cure.

ellie is just 5 years old. she spends her entire life with bandages wrapping her skin to protect it. many times, even wrapping will not prevent skin from sliding off and leaving a gaping and painful open wound that her mommy and daddy must care so carefully for. if ellie were to get an infection, she could easily become gravely ill very quickly.

we met this family and became friends. they are good people. the best of the best. their love for their little girl makes them do crazy stuff. like run the New York City Marathon, and ellie's dad is not even a runner. not yet anyway. last summer we swam in ellie's pool. swimming is good for her skin, although she has to get in the water fully bandaged. her wound care supplies cost $5,000.00 a month.

every year in October, her parents organize a free EB walk around Chastain Park in Atlanta, Georgia. people gather to support this family, to donate for a cure for EB, and to show that they care. unless you have a child with EB, you cannot know the struggle, it is beyond anything the mind can grasp fully. most of those living with EB are children, i'm sure you can figure out why. 

ellie is the star of her walk.
and a bright little star is she

every year in late April or early May, after ellie's birthday, a fundraising event to support research for a cure for EB is held in ellie's name
an annual event, in Atlanta

a cure is ellie's only hope to live a long, pain free life

the next time you are reminded of how great it is to hug your kids tight, to kiss them hard on the cheek, to run and roll in the grass, or wear any clothes you want, to eat anything you like (EB happens on the inside of the body too!), and to go about your day with SKIN...

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