Guest guest Posted April 23, 2004 Report Share Posted April 23, 2004 hi erin, my name is bethany and i have a 4 year old daughter, dx with leighs. please feel free to email me if you would like. bethany mom to brennan 7, palmer & anna grace (leighs) 4 > > 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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