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Jack

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  • 1 year later...

Welcome to the group. I completely understand your feeling as we have a similar situation with our 2 1/2 year old daughter, Grace. She has a non specific mito type. She, also, looks healthy. Although I know that she is ill, there are days I want to believe that maybe the biopsy was wrong. It is also very hard when I try to explain Gracies needs, (avoiding illness, and she is extremely sensitive to heat) people don't understand. I think alot of people think I am just an overprotective mother. These are people who have not seen Grace in the hospital with heat stroke or when we were very close to putting her on a liver transplant list.

I guess I get through it by focusing on the "good" days. I get a sence of relief when she is driving me crazy at the store. This is how I know she is doing well. When she is bad we still try to focus on what is going "good". Sometimes this may be hard to do, as I typically get scared. I know what can happen with this disease, we just use every precaution available to avoid it from doing so. Best wishes

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