Mommyof2+1

wow that is really all I can say. you have been through so much. I am fighting back tears as we speak because so much of what you have gone through is so similar to what we have been through. Hunter has so many diagonosis's that is isn't funny. He also is not typical of what affects his diseases should have (does that make sense?) Hunter has small lungs, and a large heart, he has cardiomyopathy, and is in congestive heart failure. He needs a heart transplant but like you mentioned before since he has other organs that are affected he is not a candidate for one. In November of 2005 the doctors told us that he would not make it, his heart was in very bad shape, an ejection fraction of 17% dispite all medical things they could do. amazingly enough to all of his doctors he is still here and doing better than ever over a year later. We go back to the cardiologist on feb 14 and I am hoping for good news. last visit his ejection fraction was still in the 30's he is on 7 different meds for his heart the doctors say that his heart condition is life limiting and I am also in the same boat as you, hoping and praying that what they say isn't true and that my fighter will beat the odds. I have talked to another lady down is south florida that mentioned to me as I talked to her that she thought that hunter might have a mitocondrial disease based on what I told her about him but I have yet to take him back to a geneticist. He has had 2 chromosome studies that came back normal. Thank you for sharing your story it is beautiful and full of emotions and makes the reader really feel where you have been and where you are. I am going to add a link to hunters story in my siggy.

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