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.
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.
break open she has raw skin that is similar to a burn patient’s skin.
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.
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.