Wednesday, October 26, 2011

EB Aware

This past weekend we had to make a trip to the local Children's Hospital ER with our youngest. She struggles with symptoms of asthma that are triggered during cold season, and was having her first battle of the new season. Thankfully all was fine. However, while I felt she needed immediate attention, I never feared that all wouldn't end fine. I knew that the ER was just about 25 minutes away, and staffed with very caring and helpful people. I knew that they have on hand any medications she might need and would administer such as needed. Additionally, they would try and offer both of us a comfortable, warm and clean room to wait in, along with providing nourishment and entertainment. I never had fear that they couldn't fix whatever the issue was once determined. Not once. Even if it required a hospital stay, I was sure that our sweet girl would receive whatever medical care she needed to get us merrily on our way again. All the while, I was able to provide her physical security and comfort through kisses, hugs, rocking, patting, rubbing her back and even playing silly games. The 4 hours passed pretty quickly and indeed, she was properly treated and we were on our way. 

Why do I share this with you?
To ask you to consider the alternative.

This week is EB Awareness Week. "Epidermolysis Bullosa (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." from

I have followed the overwhelmingly touching and amazing stories of several families living with EB for awhile now. It's heartbreaking to consider that not only do they NOT have the convenience and privilege I described above to take their child to the doctor, get answers and treatment and move on, they can not easily provide the physical comfort that helps both parent and child cope with pain and illness. I have wept and prayed for these families over and over, but today wanted to do more and so I share this with you all in honor of the bravest of brave children and families fighting the battle of EB. 

Take a minute to learn more. Show these families they are not alone and that their voice is most definitely being heard and changing the world of medicine forever!
And, if you feel led to support financially, it's as simple as a text...
You can learn more about Tripp and his incredible mommy on her blog, "EB"ing a Mommy. There is also a facebook page here.
Until there is a CURE!!!


Evelene S said...

I have my phone blocked for texts so I went to the DebRA sight and made a donation there. Thanks for bring awareness to this awful disease!

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