Guest guest Posted January 4, 2001 Report Share Posted January 4, 2001 Hi Vickie, Welcome to you and Kim! She sure does sound like a fighter. I'm sure that you will find at least some of the information that you are looking for on this list. The people here are a wealth of information, as well as love and support. , momma to ^^ 12/23/98-6/9/00 Pearson's syndrome and Kearns-Sayre syndrome, (and Gracie and Adri too!!) jlv1987@... wrote: > Hi, > > I'm new to the list and have found it very interesting to know so > many folks are out there battling the same things we are. > > Our daughter, , 25 - has NARP. So far, I've seen nothing on > this mito disease from anyone and was wondering if anyone else has > had the misfortune to be diagnosed with it? She's currently on the > DCA study at UCSD (going into our 9th month). > > Kim's lost nearly all useable sight and has had some major > progression of ataxia and has lost the ability to walk. She has had > some really long periods of vomitting that have left her with little > muscle. However, cognitively, she seems to be doing much better. > Her memory and retention have increased greatly. I really can't > attribute it to the DCA directly but it seems to have helped. It > also seems to help the involuntary muscle spasms. > > This kid's a fighter - she's working very hard on trying to keep > working (works 4 days per week/2hrs per day at Office Max as a > greeter), continues to have a social life, and is working on walking > and building strength as much as possible! > > Hope to hear from you all! > > Vickie - Mom to Ms. Kim - Social Butterfly! > > Brought to you by www.imdn.org - an on-line support group for those affected by mitochondrial disease. Quote Link to comment Share on other sites More sharing options...
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