a look into the future {EB Awareness Week}

A fellow blogger wrote this: I just wanted to share

life into likeness

Seems like EB is getting more attention in the media these days.  Often, the attention is focused on the kids, the “butterfly children”.  I get it.  Seeing kids suffering in the way that so many do is heartbreaking and gut-wrenching.  I see them and I want to do something to help… ANYthing to help alleviate their suffering.  The fact that I am a mother to one of these sweet children makes my desire to find a cure strong, while at the same time wanting her to live her life to the fullest without any regard for the condition that affects her daily.

There are also adults living with EB!  Yep.  It’s true.  Some forms of the condition take the lives of children when they are far too young, some forms don’t.  These children grow up living with EB, become adults living with EB, and are passionate about letting people know…

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About gespurr

Emily was born in Southwestern Louisiana and has moved over 20 times in her life through nine different states. Most of her life was spent in the Twin Cities of Minnesota, where she met her husband and had her only child. Both she and her husband are also only children. She graduated from Stillwater (MN) High School in 1992 and from the University of Wisconsin in 1997 with a BS in Journalism. Three years later, she met her husband, George, and they married in 2002. Their daughter, Kathryn, was born early in 2004. She relocated with her family back to Arkansas in 2005 after being away for 30 years. She currently works as a customer service representative for a wireless company and lives in North Little Rock. When not taking care of her daughter she is either cooking, working, cleaning house, sewing, gardening, knitting, crocheting hiking, traveling or spending time with her husband.

Posted on October 31, 2015, in Uncategorized. Bookmark the permalink. Leave a comment.

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