Wednesday, June 6, 2012

Me, a Top Blog?!?;) Vote for me and "EB part of the cure!"

A couple of weeks ago, I was thrilled, excited and humbled when I opened up an email and discovered that my blog had been selected by California Casualty as a TOP BLOG for educators!
Me???? Yipeeee!!!!  As I read on, I saw that the winner of this competition would receive a $200 donation to the charity of their choice!! As I filled out the paperwork, I knew immediately what charity I would choose!!.....http://www.debra.org/. Debra stands for the Dystrophic Epidermolysis Bullosa (EB) Research Association of America.


Meet Mareyna~Isn't she just the most beautiful little thing?!?


Mareyna is a soon-to-be 3rd grader at my school. She is definitely a "Little Warrior"!! Have you ever heard of EB? Well, Mareyna has it. Children with EB (Epidermolysis Bullosa) have skin as fragile as butterfly wings and are known as "butterfly Children". EB is a rare genetic skin disease that causes the skin to be so fragile that the slightest friction can cause severe blistering—inside and outside the body. Today there is no cure. Severe forms of EB cause patients to live with constant pain and scarring. The worst forms of EB lead to eventual disfigurement, disability and often early death.There are many patients who are diagnosed with milder forms, which, while they can be extremely difficult to live with, are non-disfiguring and non-lethal.



Luckily, Mareyna actually has the least severe type of EB. But, her wounds  can prevent her from normal daily activities enjoyed by other children. On the inside, her dreams are the same as any child who loves, plays, learns and grows despite the pain and impediment caused by her disease. Mareyna's Mom has to pop the blisters every night. If they break open she has raw skin that is similar to a burn patient’s skin.

(Mareyna's poor little arm)

Mareyna gets these blisters even from simple, everyday tasks like: her clothes rubbing against her, walking, sitting in her chair and through the movement and pressure of writing with a pencil. She has visible sores on her body EVERY day of her life. But, Mareyna is a little girl who you will NEVER hear complain. She works through the pain each and every day and is a very tough and brave little girl.

The only treatment for EB right now, is daily wound care and bandaging.Many insurance companies don't cover the "bandages" because they say they are “just bandages”.  But, there are actually special bandages that are needed and a month bill for them is $5,000. Usually one parent has to stop working to care for the child, so the income is cut. Debra has a wound care clearing house where people can get some of the bandages for free through donations. Debra also puts on a conference every other year to bring the families together and better educate them about this condition. They are working on a cure through bone marrow transplants.
(Mareyna & her mom spreading awareness:)

Learn how you can "EB part of the cure" by clicking on and "liking" their facebook page here: https://www.facebook.com/pages/EB-Part-of-the-Cure/119730184796534.
If you like and appreciate the things that are shared on my blog and would like to see the prize money go to a GREAT charity like Debra, then, please click on the button below to vote for us!!
Thank you so much, California Casualty, for this amazing opportunity!!!!

10 comments:

  1. Congratulations, Katie. I love your blog. I just voted for you! Good luck and I hope that some help is found for your darling little student, Mareyna.

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  2. Congrats, Katie! And thank you for bringing this illness to our attention.

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  3. Bless her heart! I have NEVER heard of that... she seems like a little trooper and a sweet girl! You definitely have my vote friend! =)

    Jessica

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  4. I have never heard of that illness. Bless her brave heart. I am your newest follower. I would love to have you stop by my blog when you get a chance.

    April
    Wolfelicious

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  5. Thank you for sharing this story with us. I just voted for you and hope that Debra develops a cure for friends like Mareyna. (I also shared this on my facebook page so that others would go vote as well.)

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  6. Thank you all SOOOOOO much!!! Your support means the world to me!!!;)

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  7. Thank you for shedding light on such a worthy cause and an inspiring little girl and her mom. I just voted for you!

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