Leigh's Longeivity Info..... HELP!

[Guest guest]

I need some help in settling a difference of opinion between myself and a DHS employee, in order to retain services for a young guy who has been diagnosed with Leigh's Disease. This person is insisting that Leigh's is not considered "terminal" (her word); and that individuals who have Leigh's commonly live into their eighties! We all know that this is totally incorrect, but I really don't have any specific data to present. Can any of you who have personal knowledge of Leigh's, provide me with some information regarding the ages of the persons who you know? I think the oldest person who I am aware of is in his early twenties, but I am sure that there are others.

She has made this statement in reference to a young guy who will be turning ten in a few months. I am pretty impressed that he has reached this point and is doing quite well -- especially since when he was diagnosed at about four years of age, we were told that he would probably live to be about seven years old. We consider every day an extra special gift! He has been on the Mito Cocktail for years, and I firmly believe that it has made a tremendous difference in his health and longevity. The DHS employee obviously knows nothing about Mitochondrial Diseases; and does not at this point choose to recognize the importance of these supplements. She insists that she has researched Leigh's on the internet, and has found that people live well into old age after being diagnosed.

I need help in making my case for the little feller"! Any age or longevity information which you would be willing to provide will be greatly appreciated!! Consider this a survey, if you will; but be assured that I will pass along no personal information -- only numbers! Thanks bunches!!

Sue

[Guest guest]

This article on the UMDF site has information regarding Leigh's

http://www.umdf.org/RAHMAN1.htm

mom to ^ Kayley^ 03/16/00 - 09/23/00 Leigh's diseaseSinead age 5, healthyhttp://myweb.ecomplanet.com/MCMA8011Kayley's mitoangel friends http://jennymc3.tripod.com/mitoangel.html

[Guest guest]

This article on the UMDF site has information regarding Leigh's

http://www.umdf.org/RAHMAN1.htm

mom to ^ Kayley^ 03/16/00 - 09/23/00 Leigh's diseaseSinead age 5, healthyhttp://myweb.ecomplanet.com/MCMA8011Kayley's mitoangel friends http://jennymc3.tripod.com/mitoangel.html

[Guest guest]

This article on the UMDF site has information regarding Leigh's

http://www.umdf.org/RAHMAN1.htm

mom to ^ Kayley^ 03/16/00 - 09/23/00 Leigh's diseaseSinead age 5, healthyhttp://myweb.ecomplanet.com/MCMA8011Kayley's mitoangel friends http://jennymc3.tripod.com/mitoangel.html