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

[Guest guest]

Thanks to everyone who has responded to my question regarding Leigh's Syndrome. You have done a great job of confirming what I already knew, and providing undeniable evidence for me to present to the DHS employee! Actually, I doubt that she had in fact, researched ANYTHING, since her "information" was so completely erroneous!

I called her today asking for a fax number in order that I could send some of the info that you great people had provided to me. Boy -- was she a changed individual!! Seems that communication had been made between the young boy's medical doctor and the DHS employee -- and he had made quick work of setting her straight!!

I don't believe that her intent was to deny benefits because of the prognosis of a possibly limited life span; but was more to question the importance of the mito cocktail and extensive care and benefits that he requires. For someone who has such a serious diagnoses, the kid can look awfully healthy most of the time! For that we are very thankful, but unfortunately he happened to look exceptionally well the day that the DHS employee met him for the first time!! That, combined with her ignorance of the disease, could have created an unpleasant situation. I am hoping now that there will be no question regarding the continuation and need of his present treatments and benefits. Other DHS employees who are familiar with the young man have always bent over backwards to see that his needs are met. I guess it was just our turn to draw a reviewer who didn't want to be bothered with the facts!! Hopefully with the aid of the doctor and the information provided by list members, a nasty situation has been averted!

Thanks to all!

Sue