Category Archives: Uncategorized
A fellow blogger wrote this: I just wanted to share
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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One more week. We’re hoping that’s what I have left, is one more week in this bandaging that makes me look as though I have elephantiasis of the big toe. Read the rest of this entry
So, this is happening. It may be another failure.. Or it may not be.. Read the rest of this entry
Anyone who knows me knows that I’m a stickler about spelling and grammar. At times, I’ll overlook it, chalking it up to Autocorrect on our phones. I know, as my Iphone does it all the time. However, when it’s blatant or persistent, it feels like nails on a chalkboard. Read the rest of this entry
My daughter is an only child; by conscious choice. Though I’m generally open on my blog as to why my husband and I only have one child, I don’t discuss it in public simply due to the long explanation involved. I choose to keep it brief “It’s for medical reasons”. However, for years after we had Kathryn, we were asked, even by close friends and relatives, many questions. Some of them were ignorant. Some of them were hurtful, especially since George and I are both only children ourselves. Read the rest of this entry
I jumped on the MileyWagon and am sharing this recent open letter from another blogger.
Kathryn was three when her Aunt Tammie died in July, 2007. Tammie left a husband and two children, ages five and nine, that Monday morning. Kaci has no memory of her and vaguely remembers going to Texas for her funeral. Read the rest of this entry