Long journey
When my daughter maddie was born she was so fussy we never knew why just assumed it was the formula or maybe she had gas on her tummy when she was 6 weeks old she would projectile vomit after any meals all of the doctors simply said she is just adjusting to the milk and she will grow out of this well she has had those episodes all of her young life they seem to be worse when she was excited or upset and were less frequent we just thought she had a nervous stomach when she was 14 she got what we thought to be the stomach viris she ended up in the hospital getting fluids she continued to loose weight over the next few months finally they referd her to the childrens hospital here in nc she was diganosed with CVS of course i had no clue what that was I had a very healthy energetic child then all of the sudden she was sick and they are telling me there is no cure for this our world has been turned upside down in the most dramatic way watching your child suffer daily is bad enough now every time she has a scan done they find other things wrong she has CVS , and A Bicuspid Aortic valve disease a Dialated acceding aorta in her neck and a tumor on her liver she still dances with her local dance studio they travel and attend dance competitions staying busy has helped her find herself some of her friends dont under stand why she is so sick its hard to explain all of this to teenagers but they seem to accept her how she is if she is in a episode they help her and she still goes on that stage and smiles even tho she is hurting and nauseous she is my hero love my sweet girl I just wish i could take this horrible disease away from her but I dont know that i would handle it as well as my now 16 year old daughter
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