Monday, January 26, 2009

So rare.... yeah right.

A storm of emotions are brewing inside of me.  Anger, frustration, disbelief, deep sadness..... are what I am feeling tonight.

Today I found out that precious little Zoe from Arizona, passed away just after midnight, from Krabbe Disease.  Then I found out about another little girl in Arkansas who just turned 1. Harlee was diagnosed with Krabbe on December 15th.  

I don't understand it.  Why in the heck do these precious babies keep having to die.  Why in the heck can't ALL 50 states test for ALL diseases.  The capability is there.  

I am outraged.  I can't comprehend it.  I can't wrap my mind around it.

Go ahead, research Krabbe Disease on Google.  The thing you will see most often is how freaking rare this disease is.  REALLY?  Go tell that to Judson's mom, Greyson's mom, Zoe's mom, Harlee's mom, and the hundreds of other mothers out there who has or had a child diagnosed with Krabbe Disease.  Yeah, it is extremely rare..... 

I sit here, tears rolling down my face, rolling my eyes, in disbelief.  How could such a cruel disease be allowed to continue to attack our precious children?  

This is why we will continue to fight.


Carrie said...

I have no words {{hugs}}

Anita said...

Misti, it's unreal. I wish I could comfort you, but I know your anger and your voice, along with many others will bring change to newborn testing.

Hugs to you Misti

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