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PS From Kathy: We are facing an unknown diagnosis. We are not saying that she HAS mito. We are simply saying that doctor after doctor has looked at us when we said we are going to Atlanta (after her neurologist referred her) and said "oh that makes a lot of sense". It becomes more and more real that it's a honest possibility. Mito is not fun. It's not cureable. We don't want that to be on our daughter's list of diagnoses. BUT It's life. It's what we are facing. It's what at this time we are trying to process. I mean honestly they are cutting Delaney's leg open and sticking a needle in her back to extract fluid to test for this disease. If it wasn't a big possibility of the answer we would NOT put her through it. Thank you for hanging in there while we search for answers and live life. I am glad that Jess posted this to share information. We have some friends whose children have Mitochondrial Disease already diagnosed. We have other friends that are in the process like us. And it's important to get the word out. To make Mitochondrial Disease a household name so research and support grow!
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