Little Amber

My heart is breaking.  

When I first learned that Niko has I-Cell, I searched everywhere to get my bearings.  The first blog that I found was Amber's Adventures.  Amber's was the first face I saw and the first child to introduce me to what is now a very familiar world of I-Cell.  It is through her blog that I discovered the online community of I-Cell families (with whom I communicate almost on a daily basis).  By reading about Amber I learned about the fears and also the joys of bringing up an I-Cell child.  I learned how to revel in the small stuff.  Small hands ringing bells, small mouth eating food, small face wearing a frown.  Better yet, a small girl wearing a smile.  A small child celebrating a birthday.  

Amber is now very sick.  She, along with the other I-Cell kids, fight viruses everyday and many stay at the hospital often.  But this time, we are all worried.  She is in serious condition.  It seems that Amber's little heart is failing.    

A note from her father.
"Had a really bad night finally got her calm enough to sleep for a couple hours around 2am. We have her on CPAP now and she is holding her sats but her heart rate hasn't come down from the 160s at all even with constant morphine and ativan. Most of the time she has been very agitated and hasn't stopped coughing and wheezing with the exception of a little while at the peak of her medication this morning. We are waiting on cardiology now to better assess how bad her heart failure is and how long they think her heart can handle the sustained stress. Once that happens we will need to decide which direction to take from here. ( if possible to get her heart rate back down and get her home for a while longer or to medicate her more heavily to give her the maximum comfort possible until her heart stops.) Thank you all for your thoughts and prayers it means a lot."

Dear Amber, I wish I can give my arm, my leg or my kidney to protect you, to protect all our i-cell children. If I could, I'd do it in a second. I hope you will be become I-Cell free calmly and peacefully.

I'm shattered.  Im a wreck. I'm in tears thinking about this girl, a girl who just turned three years old, who most likely weighs no more than 13 pounds.  A girl who has done nothing to deserve this.  She was innocently born with the same disease that is destroying my daughter's body.  I-Cell is so fucking cruel.  I hate you I-Cell!