IMAGINE THAT
Imagine you have waited nine months and
the magic day has arrived. Imagine
you go to the hospital to be surrounded by smiling faces telling you how
wonderful this is going to be and you wait and wait and finally the magic MOMENT
has arrived.
You push and scream and yell the appropriate curse words and think it is
never going to end and then, there he is, the little boy you have prayed for and
dreamed of for so long.
Now imagine that the smiling stops and the calm, reassuring look on your
doctor's face is replaced by one of confusion and concern.
This is supposed to be the happiest day of your life and suddenly in a
blink that is all over. Joy is
replaced by fear and your dreams with nightmares at the sound of the words -
There is something wrong here. Hours
later, you are told that your child has been born with a genetic skin condition
called Epidermolysis Bullosa. Visions
of basketball games and rough-housing on the living room floor fade and blur. The good news is your baby is alive, the bad news is nobody
is sure for how long. But he may
live you beg. Yes, but life will be
torturous, never ending pain.
This is not some science fiction tale;
it is reality for the parents of children born with Epidermolysis Bullosa called
EB for short. And it is only the
beginning. You can't hold and
cuddle your little one because you will cause their skin to blister and slough
off. Hours that should have been
spent cooing and making silly faces are instead consumed by massive bandage
changes that for many EB kids mean from the neck down.
Instead of kissing little fingers, you use all your strength and patience
trying to catch them so they can be wrapped individually to prevent webbing and
constrictures. You had hoped to
always remember the sound of their laughter but you now know that the day you
die you will still hear the screams and know that you were the one causing them.
And once you get home the fun really
begins. Insurance companies have
never heard of it or consider the necessities of your new life unnecessary.
Why do you need 3 cases of gauze a month they ask, isn't that a bit much?
Why does your child need Pediasure, are they too good for regular
formula? Mepitel, that's expensive,
won't Vaseline gauze that sticks to wounds do just as well?
Everything is a battle and no one seems to understand that it is a battle
for the life of your child. Well,
maybe you can get some help from the government right?
Just try to get Social Security to help pay for any of the mounting
expenses that are starting to resemble the national debt.
You make too much money and the recurring - I have never heard of it-
constantly ring in your ears. You
want to scream - Listen to me you jerk, nobody makes enough money to provide for
an EB child!
But somehow you make it through and it
looks like there may be something in life for this young person you have fought
so hard to get to this point - young adulthood.
No more worries, he knows how to take care of himself and he has adjusted
well to life with EB. He has found
someone who is willing to look past his deformities and see the beauty of his
soul. And the phone rings, just a
regular check up but they found something, want to run some tests.
The results are in - Squamous Cell Carcinoma- skin cancer you think - no
big deal after all you have been through. Thirty
days later you are planning the funeral and trying to make sense of it all.
You curse doctors and nurses and most of all God.
The only thing that keeps you going is that no matter how bad your pain
is, you know that sweet child is finally out of pain.
Imagine this is your life.
It could be you know. Seventy
percent of EB children are born to parents with no history of EB.
Imagine the next time your wife or daughter or daughter-in-law or even
granddaughter says those mystical words - I'm going to have a baby - and nine
months later you don't have to worry about how to spell Epidermolysis Bullosa
because it was tattooed on your heart the moment you saw the new little munchkin
you waited so long for.
There are ways you can help.
Help fund research for a cure. We
are very close and it is our children's' only hope.
Contact the EB Medical Research Fund at Stanford University 130
Sandringham Road Piedmont, CA 94611 or DEBRA of America Inc. 40 Rector St. Suite
1403 New York, NY 10006 for more details on how to help find a cure.
Force Insurance companies to provide these children with the supplies
that they need and educate Social Security Workers on the need to help not
hinder. Tell the world that October
25-31 is National Epidermolysis Bullosa Awareness Week and that every dime
helps. With your help there is hope
that someday EB will be a thing of the past, a science fiction tale.
With your help there can be a day with no pain or blisters or begging for
help for our children. IMAGINE
THAT!
Thanks for listening, now please do
something!
Debby Lilly