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My Son Anthony was diagnosed in April with complex 1 and a carnitine def. He is only 2 and was wondering if anyone would like to share there story with us. I know Mito ranges but, I have so many unanswered questions. Not knowing what the future holds and not knowing what I can do to help him is so fustrating. He has days that all he wants to do is lay down and watch tv or he just lays down and plays. It is so hard to know if he is just being lazy or if he really doesn't have the energy. I also have a 8 month old girl and they couldn't be any different when it comes to their energy. He also has this thirst he is always thirsty. We have had some test done but all have come back negitive. When I restrict his water he is just more tired. Doctors have no answers. I would love to hear from someone on how it is affecting them or their Child.
Sarah ( Anthony's Mom)