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The Devastation that is EB
By Denise Ippolito
Dandurand
As the mother of a child with EB, I can tell you
first hand what this disease does to people.
My son, Hunter Dandurand,
is 2 years old and has Recessive Dystrophic Epidermolysis Bullosa (RDEB).
Being my first, and only child, I wasn't sure how parenting was going to
be, but I never imagined anything like this.
EB is a devastating
medical disorder that affects everyone who comes in contact with it. Not
because it is communicable, it's not, because it is so graphic and painful
most can't bare to see it. If you can find a doctor that is familiar
with EB, which I assure you is no easy task, they will explain to you what
EB is. They will further tell you that there is nothing they can do. The
medical community does not have the answers; all they can tell you is that
they are working on it. Though there are many doctors researching
this disease the cure is still years, maybe decades, away. At
current they can't even offer a treatment to lesson the symptoms.
Every morning my son wakes up in tears. The pain he feels everyday of
his life is more than most people will feel in a lifetime. The
blisters never stop coming, and the scars continue to thicken. Eventually
the scar tissue will cause strictures and contractures, painfully
immobilizing the victim until they are completely disabled. We battle
infection and malnutrition everyday. There is a specific type of cancer
that gets involved due to the continual breakdown of the skin that is very
severe. If you successfully fight all the infections and
malnutrition, somewhere around the age of thirty is the average life
expectancy of a RDEB victim. In the long run, RDEB is a terminal disease.
They say when one is faced with a tragic disease that there are phases you
go through. The first being denial, where you can't accept that this is
happening to you. The second being bargaining, where you bargain with God
or Satan, or whoever will listen. The last being acceptance. For some
acceptance will mean sitting back and letting it happen, for others it
will mean fighting to the very end. I belong to the second group. I have
put my faith back in God. I now thank him for every day and every smile I
get from my son. I have also put my faith back in me. The first 25 years
of my life were just preparation for this. There is no blame to be placed,
only answers to be found. The cure is within our reach if we believe it to
be.
Please help support
the research of EB.
Visit our websites, read our literature, meet our
precious children.
Tell everyone you know about it.
The more
people that know, the more people will care, and the more people will
help!
There is a direct link between
the cure and public awareness. Help us spread the
word.
Sincerely,
Denise
Ippolito
Mom to Hunter
Dandurand
My Child has EB
You begin to feel
Something less than real
When reality sinks in.
The doctors say
There is no way
To help him with his skin.
At first you cry
Demand to know "why"
Challenge all belief.
This cannot be
You cannot see
There must be some relief.
They aren't even sure
If they'll find the cure
Nobody seems to know
So there you sit
Saying "this can't be it"
As your world spins out of
control.
The pain he knows
As he starts to grow
Is more than a
child should bear
He is strong and smart
And in his heart
He
knows that Mommy's there.
If this is a test
I will not rest
I
will see it through somehow.
This disease
Will not beat me
To this I do a
vow.
Denise
Ippolito
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