Sunday, March 27, 2011

A Sad Story.

Since Raquel was born I've had my google account send me any interweb news with the call word Recessive Dystrophic Epidermolysis Bullosa.  This past week I was sent this article about Alice Irvin.
I spent the week telling my friends about this amazing young woman with spirit and seemingly indomitable will to let the stack dealt to her get in the way of how she saw the world and how she was to act within it.  She seemed brave and a great role model for our little family.  Each of us.  Unfortunately with every EB story I hear there are always a few new details very difficult to internalize.  I'm told EB effects every child differently, but we are likely to go down this path or that.  Almost none are remotely preferable over the next.

I had every intention of somehow tracking Alice down and was mentally preparing how I was to approach her and what I might say.  It's a seeming huge wall when we reach out to another family with EB.  It's scary in terms that many unknown issues become less so.
Ignorance is bliss.
But of course we can't be ignorant.  We can't afford to be ignorant, for Raquels sake, for our sanity. 

On Friday while I was off working, Simona was over helping out again.  Renata and her started to talk about Alice, apparently Simona had heard of her too, except her story wasn't as uplifting as Renata's.
Renata informed me late last night this news and all I can say is,
A great sadness.

The community that is stricken with the extreme forms of EB is very small.  So when a new soul is born or another has passed away the effect on us is eye opening to say the least.

I have so much to say, but it's just a incoherent jumble so I'll not bother.

No comments:

Post a Comment