I know I rant sometimes and it might seem from left field. Its usually not. My post about Bella is because she has been admitted AGAIN to the hospital. My Niece and I love her so much. Her disease is rare and something that is referred to as an orphan ailment so there is no funding for a cure. I have been dealing with so much leg pain lately and so when I complain mine is NOTHING compared to hers and she is so young. It seems so unfair and it make me so mad. I want to fix it. I want someone to fix it. I feel like I am always at or around doctors for various reasons and so many just don't care. (don't truly get me started on some of my personal feelings in reference to the arrogance of some doctors) I think every ailment is HORRIBLE but when you have something that effects your family of course you take it personally and want to fight to fix it. Can you imagine being a child that can't eat ice cream or run and play with your friends? The reality with cardiac vlcad is her heart may stop. Her CPK levels get so high that even moving her legs hurt her. I am not being dismissive to ASL with the reference to the ICE Bucket challenge but I want to fix Bella. That is all.
PLEASE learn more and how you can help Bella and others who have genetic disorders. Thanks for reading!
Another day in the rant:)
My heart truth~
DL
My heart hurting truth.
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