~ Erynes Transplant and Beyond ~

How does a Mother start to ask for help ?   I was told I should still set things up... Didn't .. because, well I felt like it was saying I was giving up, or perhaps some part of me giving in to CF ( Cystic Fibrosis )   We are in fact at a time where the amount of monies it will take for our family to support Eryne during transplant and living care are huge. These figures include medications not covered by her insurance,housing as we are required to be so many miles from the hospital the first year . loss of income as I am required to be her caregiver for a minimum of seven months 24 hours a day,any and all procedures and medical equipment not covered, living care after transplant is HUGE and sadly funeral expenses in the event they are needed. ( yes we have to and were asked be prepared for this as well )

Many of you know our story as I post updates often. I had a fellow CF Mom ( Cyster Mom ) share with me the other day how proud she was of me as her friend for still reaching out to others to pray, to simply say thank you, and mostly to share our journey.  I truly didn't realize that I had been doing a lot of what she mentioned.   I feel that Eryne is the strongest person I know. Her will to strive forward is deeper than we can imagine. Her will comes from GOD !!  
 
I had thought that I had truly given my all to GOD, until I was challenged with the thought of letting Eryne go. I trust 100% in his plans and know now that sometimes his answer may not seem like prayers have been answered, perhaps that is because his answer was he is busy working on someone else, or simply his answer is no. I trust in GOD to take Eryne home if that is her calling. I myself want to go to heaven so I am not about to step in the way. In the event she is taken home, I trust in my family, all of you and my faith to keep me content. 
 
   Eryne said some very powerful things when she was younger :  
 
1st. Why is everyone worried about me dying when I am living now. This may now be the way I choose to live, but it is living.  
 
2. Everyone has their own battles, mine is Cystic Fibrosis, others may be smaller things but to them it is HUGE, we all have a common goal however and that is to grow towards Christ. 
 
I could not be more proud of her as a mother and friend. Truly if I could be half the women she already is I would be that much more blessed. 
  
Eryne is now 23 and  03/14/14 My daughter died twice from a spontaneous pneumothorax.  A Cyst had burst inside her lung and blew a huge hole in her what we used to call "good lung" She now has three chest tubes, sugars way out of control and in need of getting listed and transplanted a.s.a.p.   
 
We are completely at a loss of how to take care of things financially, the Burdon is very heavy on our shoulders. Truly when I say it feels like my world is spinning out of control...  I think it is !!!  
 
I know many of you like me don't have large amount of money just laying around. I am asking please, share our story, not just what I typed above but what you know of our family and especially Eryne. Send this link to as many people as you can. Please help us get the word out.  
 
I will close with something that was shared wtih me and has become very dear to my heart. She was Gods Daughter first!!!  
 
 
 
Our faith is bigger than our fears !!! 
  
Your Cyster Mom ,
 
Kimber
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Organizer

Kimber Shan 
Organizer
Lake Elsinore, CA
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