Have you ever wanted to do something but thought
no money.
no power.
no way.
I have.
But then. I remember. There is always a way.
But then. I remember. There is always a way.
Because we always have a choice.
And I remind myself of this mostly because I have once thought - "If _x_ happened, I would NEVER be able to handle it."
But then _x__ happens.
And you handle it.
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But some things are unreal.
Like EB.
And there are families handling it.
In amazing ways.
My heart has always gone out to the families that fight this battle.
What is EB?
EB stands for- Epidermolysis Bullosa
The Epidermolysis Bullosa Medical Research Foundation (EBMRF) describes EB this way:
But then _x__ happens.
And you handle it.
--------------------------------------------
But some things are unreal.
Like EB.
And there are families handling it.
In amazing ways.
My heart has always gone out to the families that fight this battle.
What is EB?
EB stands for- Epidermolysis Bullosa
The Epidermolysis Bullosa Medical Research Foundation (EBMRF) describes EB this way:
EB is a group of diseases characterized by blister formation after minor trauma to the skin. This family of disorders, most of which are inherited, range in severity from mild to the severely disabling and life-threatening diseases of the skin. This rare genetic disorder affects all ethnic and racial groups. Estimates indicate that as many as 100,000 Americans suffer from some form of EB.
In simpler terms:
If you have EB, your skin doesn't hold on like it should. A bump can cause wounds that would shock you. Friction is your worst enemy.
A baby can go to sleep one night and wake up with a giant wound - from the mattress.
And this means... constant watch for infection.
constant bandages all over your body.
and constant pain.
One of the worst aspects is that it's not just the skin on the outside of your body at risk.
Other mucous membranes on the inside of your body are affected.
Major blistering can form many places ~ like the eyes and throat.
It is terrible.
______________________________________________________
A bath is a nightmare.
And a bath is necessary daily to keep infection away.
Imagine the children who don't know any different.
Now, here is what blows my mind.
If you have EB, your skin doesn't hold on like it should. A bump can cause wounds that would shock you. Friction is your worst enemy.
A baby can go to sleep one night and wake up with a giant wound - from the mattress.
And this means... constant watch for infection.
constant bandages all over your body.
and constant pain.
One of the worst aspects is that it's not just the skin on the outside of your body at risk.
Other mucous membranes on the inside of your body are affected.
Major blistering can form many places ~ like the eyes and throat.
It is terrible.
______________________________________________________
A bath is a nightmare.
And a bath is necessary daily to keep infection away.
Imagine the children who don't know any different.
Now, here is what blows my mind.
~ most people have never heard of EB ~
I only know of it because years ago I saw a documentary showing some children that were living with EB.
Once you see it- you don't forget it.
mostly, you don't forget the kids.
Like this guy :)
Meet Tripp
WATCH TRIPP BEING ADORABLE
I only know of it because years ago I saw a documentary showing some children that were living with EB.
Once you see it- you don't forget it.
mostly, you don't forget the kids.
Like this guy :)
Meet Tripp
WATCH TRIPP BEING ADORABLE
But- what is amazing... What is freaking amazing.
Things are happening.
Where there was once no hope,
there is.
DEBRA details clinical trials here on their site.
And you can check here for additional research updates.
______________________________________________________
Dr. Tolar and Dr. Wagner are making strides with clinical trials involving Blood Marrow Transplants.
If you clicked on any children above you will see that Bella is a part of this endeavor.
That Daylon is a part of it as well.
And those are only two stories.
Things are happening.
Where there was once no hope,
there is.
DEBRA details clinical trials here on their site.
And you can check here for additional research updates.
______________________________________________________
Dr. Tolar and Dr. Wagner are making strides with clinical trials involving Blood Marrow Transplants.
If you clicked on any children above you will see that Bella is a part of this endeavor.
That Daylon is a part of it as well.
And those are only two stories.
I have donated to EB research once or twice.
But I want to do more.
More than I feel like I can do.
When peoples care for you and cry for you, they can straighten out your soul.
Langston Hughes
So. here is a print to honor these babies. families. children. adults. friends.
To honor the spirit of those with EB.
and those who love and take care of someone with EB.
and most importantly, to join in the hope that these families have for a better life for their child.
for a pain free life.
If you buy this print.
It is $ 105.00
and
50.00 will go to EB research.
From Debra.org,
"Today, there is no cure or treatment for EB, except daily wound care and bandaging. Genetic research is making progress towards treatments and a cure."
_____________________________________________________________________
Because I Believe.
_______________________________________________________________________
But I want to do more.
More than I feel like I can do.
When peoples care for you and cry for you, they can straighten out your soul.
Langston Hughes
So. here is a print to honor these babies. families. children. adults. friends.
To honor the spirit of those with EB.
and those who love and take care of someone with EB.
and most importantly, to join in the hope that these families have for a better life for their child.
for a pain free life.
If you buy this print.
It is $ 105.00
and
50.00 will go to EB research.
From Debra.org,
"Today, there is no cure or treatment for EB, except daily wound care and bandaging. Genetic research is making progress towards treatments and a cure."
_____________________________________________________________________
Because I Believe.
_______________________________________________________________________
________________________________________________________________________
1 comment:
My name is Brett Kopelan and I am the Executive Director at the Debra organization. We are the group that supports research for a cure or treatment for EB. We also have many programs for those that suffer from this disease, like my daughter, Rafi, and like Tripp. Please reach out to me at Brett@debra.org. I would like to speak with you about this.
Thanks for promoting the cause.
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