The steadfast love of the Lord never ceases
His mercies never come to and end...

Tuesday, January 8, 2013

a Buck for Ben!


Hello everyone!  I wanted to use my blog today to spread awareness of a condition called Epidermolysis Bullosa (EB for short). 
 
In a nutshell, EB is a connective tissue disease causing blisters in the skin and mucosal membranes, with an incidence of 1/50,000. Its severity ranges from mild to lethal. It is caused by a mutation in the keratin or collagen gene. People with EB lack these protein anchors, so when there is any friction on the skin, the two layers rub against each other and separate, resulting in painful sores and blisters.

In it mildest form the blistering is confined to hands and feet. In its severest form the whole body is affected, wounds heal extremely slowly, there is significant scarring, physical deformity, and disability. In its severest form EB is fatal in infancy.

Benjamin Joseph Wiley, Jr. was born on Oct 27th, 2011. Though it had been a normal, healthy pregnancy and delivery for Ben and his mom, it was immediately clear that something wasn’t right: baby Ben was missing the skin on his hands and his left foot, and had blisters in his mouth and on his lips.

Up until about 6 months ago I never even knew this condition existed, and then I came across a facebook page called, 'Honoring a EB Soldier, Ben Wiley Jr.'.  I saw a picture of this precious little boy, and he stole my heart instantly, but the pictures also broke my heart because he suffers from EB.  As I learned more about EB through his mother's posts I came to realize not only how this boy suffers each day, but just how expensive this condition is.  The money involved in cleaning the open wounds and blisters, keeping them covered appropriately, preventing infections- it's staggering! 

 
 
As a parent myself I simply could not imagine what Ben Sr and Sirena, Ben Jr's parents, go through each day.  My mother's heart wants to help them through daily prayer, but also through raising funds to help ease the burden of the cost involved. 

"A Buck for Ben" has come about as a way to raise money to help this amazing family. 
I know times are tough, financially speaking, and not everyone can afford to send $50, $20, or even $10.  But most people CAN afford to send just one dollar!  Yes just one dollar, one buck for Ben Jr.  It would leave only a teensy-weensy dent in our wallets, but would impact this family tremendously if we all could pitch in and help.  One dollar- One Buck- that it! 

Would you please consider helping them?
Please help them by praying for them each day, please visit their facebook page to learn more about this horrendously painful condition.  As an adult, I couldn't imagine the pain of open wounds and blisters.  But as a child, who doesn't understand why he is in so much pain, and who still has to endure the pain each day, it just breaks my heart.

Please click on the link to their facebook page:  https://www.facebook.com/BenWileyJr/  and become a follower by liking their page.
 
Please pin this image if you're on Pinterest
(and repin weekly or daily for more exposure)
 
And please visit the new blog: http://abuckforbenjr.blogspot.com/  to find out how you can help, and how you can donate your Buck for Ben.

Thank You!!


Raising Homemakers
DeepRootsatHome

4 comments:

  1. Thank you for sharing this - a buck and prayers...


    Marissa
    http://forfunreadinglist.blogspot.com

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  2. Well, I never heard of this disease until today on your blog. What a precious little face he has and what pain he must live with. Thanks so much for letting me know, I will pop over there.

    On a happier note, I hope you had a lovely Christmas and New Year!

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  3. Thank you so much ladies for popping into my little blog and leaving your nice comments. :) And thank you for helping Ben Jr's family, I know every little bit will help. I have fallen in love with this precious little boy and just want to help by spreading word. Again, thanks for helping!! God bless you!
    Julianne :)

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  4. Julianne,
    I am praying for this family and little Ben. Thanks for sharing the need...to God be the glory!

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