Wednesday, October 31, 2012

National EB Awareness Week

Dear friends,
Did you know that this was National EB Awareness week?? 
You may remember the post I did about my little friend Mareyna. Mareyna is a student at my school who has EB.
Here is a picture of us at school:)

P.S. Yes, my blog won the Califonia Casualty contest and $250 was donated to DEBRA. DEBRA is the only non-profit dedicated to funding research and providing services and programs for those with EB (Epidermolysis Bullosa).
EB is the worst disease you've never heard of!!!EB is a rare genetic skin disease (affecting only 1 out of 50,000 births). In this condition, there is a defect in the connective tissue of the skin and mucous membranes that causes severe blistering-inside (such as the mouth, stomach, esophagus) and outside the body.  These blisters can cause serious sometimes fatal problems, when they become infected.  The sysytemic and repetitive nature of the blistering leads to blindness, swallowing and breathing difficulties, scarring, infection, disfigurement, disability and dehydration. 87% of babies born with one of the more severe forms of EB do not live more than 12 months. There is NO cure for this horrific disease.  The sores that they live with every day can be compared to third degree burns. They live with unthinkable pain.
EB Patients are known as "butterfly children" because their skin is as fragile as butterfly wings. To help you understand what these precious babies go through PLEASE check out these blogs.
Baby Easton was born on August 23rd...(1month older than my baby Finn-so reading and watching this really hits home for me.) Baby Easton was diagnosed with a severe form of EB. I encourage you to read his story and watch his videos. Click on the picture of baby Easton and his Mommy to visit his page.

This is a AMAZING blog about a little guy named Tripp Roth. His Mom put together this AWESOME and VERY informative blog called "EB"ing a Mommy to document their journey. PLEASE check it out!

Just breaks your heart, doesn't it? Want to do something to help?? Of course you can always donate to DEBRA. But I have a SUPER EASY way for you to help RIGHT NOW!!!!!
Meet Christie. She is dedicated to raising money and spreading awareness for EB. AND she has been nominated for the Yahoo! Women Who Shine Award. PLEASE, PLEASE, PLEASE take a minute to vote!!!!!! If she wins, $10,000 will be donated to EB treatment and research for a cure!!!!!!!!!!!!!! She is currently in 3rd place. You have until Nov. 5th to vote! Please help by clicking on this link and voting for Christie!!!!
You can check out an EB blog that Christie is involved with called I Refuse and her facebook page called This Little Light.

O.K.  One more thing. I'd like to share some pictures of the EB Awareness walk that Mareyna and her Mom put together in our little town. She was able to raise $2,000 through T-shirt sales to donate toward EB research!!! Yay!!!!! 
Ella is another little girl from the St. Louis area who has EB. She joined Mareyna in our small town walk:) Here is a picture of Mareyna, Ella and some friends before the walk:)

(Sadly My camera was acting up-so, I didn't get very many pics:( Here is one that someone else snapped-you can see me in the back looking at my camera and trying to figure out what the heck is going on!!! LOL;)

Thank you so much, Mareyna for educating others about EB!! You are an amazing little girl!!;)

Happy Halloween!!!!!!

3 comments :

  1. They actually found out that baby Easton has the same form as Ella and Mareyna EB simplex and then there is three subtypes. Mareyna has the middle subtype and Ella and Easton have the most severe subtype. Ella is in a wheelchair because she blisters so bad on her feet it is tOo painful to walk. Mareyna gets some blisters on her feet. Usually the babies are worse because they have just gone through the birthing process. Luckily Mareyna was a c-section so did not have too much trauma at birth. Their bodies are so little and then fighting this horrible disease and baby Easton has had blood infections. It is so sad when you hear the amount of pain meds he needs to be on. I thought he is probaly thinking, " I don't like this new place, I want back in my mommy's womb!". Thank you mrs mense for helping spread awareness, you are wonderful!!

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  2. Sounds interesting. Looks like you are a specialist on this because you just made it so easy to be with you, motivated me to learn more on the subject!
    Regards
    Pre School Education

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