Guest guest Posted April 22, 2004 Report Share Posted April 22, 2004 Hi all, I am an adult with mito and have been on this site for many years, mostly as a lurker.. My daughter is also suspected to have mito but is only mildly symptomatic thankfully. I am hoping you guys can help me with a friend. Her little girl who just turned 2 was just diagnosed with Leighs. Her brother died from the same disease 3 years ago. Her mom isn't handling it very well which I guess is to be expected. I have e-mailed her the UMDF site and told her about the mito group. I am also looking for people in the Southwest Florida (Sarasota) area who might be able to offer resources. From what I know, Hannah has had several seizures recently and has lost much of her eyesight. She doesn't appear to be doing well although I'm not fully sure of her condition. I know they were looking for some kind of service to help them through this. I was wondering what others in this situation have done. Can you guys give me any advice on how to help the mom? I think she is nearing her breaking point and we want to do anything we can to help but don't really know how. I was shocked to find out it was mito. What are the chances that we would both have this terrible disease with the same complex deficiencies. I guess it may be more common than we think. I would appreciate any help you can give me. 2 Quote Link to comment Share on other sites More sharing options...
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