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Location: Near the deep south

I am just Diane, just a mom and a wife. I have 5 children that range in age from 18 down to 2. I am also feeling particularly crafty lately and have opened an etsy store. Please feel free to check it out.

Thursday, May 6, 2010

My post about a super special girl.

Her name is Rafi.  I started following her (daddys) blog just after they entered the University of Minnesota hospital for a stem cell transplant.  She is just 2 years old.  She has Epidermolysis Bullosa.  I learned about this rare skin disease when I was blog stalking and came across another blog about Jonah (his button is on my sidebar).  I LOVE these kids.  I encourage you all to visit them and learn about this terrible disease.  They say it is "the worst disease you never heard of" and man, words have never rung so true.   There are so many different variations of EB but these precious babies suffer from blisters over their whole body because their skin is as fragile as a butterflies wings.  The slightest bump can cause blisters.  They require bandages to protect their skin.  These wounds are not only external, but internal as well.  Many of them lose all of their fingernails and toenails. They suffer in so many ways.  Some die in infancy.  BUT, if you were to go look at the blogs of some of them...  they are smiling and loving life.  Despite their afflictions, they are happy.  I am in awe.

When I started to write about her the other day it was because I was feeling all sorry for myself for being under par with the surgery.  I just have to think about all that Rafi (and all children living with EB) and all they have to endure... and I realize that my problems are so minute.  She has smiles for everyone despite her pain and me?  Well, I can just be a pain.  Make sure you go watch her videos.  I could just eat her up.  She is just so adorable.  

Please visit her blog.  Please keep these children in your prayers.  Please pray for a cure.  You can also visit the DebRA website to learn more and even donate to this cause.

Thank you to Brett and Jackie (Rafi's dad and mom) for sharing her.  I am inspired everyday when I visit your blog.  I wish you the very best and as always, I keep you safely in my prayers.


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