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

[Guest guest]

Wow! Sounds like Conner and Trevor have a few things in common! Trevor will turn ten in July and is doing quite well - considering! He was diagnosed at about four years of age, and has had some pretty tough trials through the years, including spending three weeks in a coma a few years ago. Presently he is doing very well - enjoying school, and keeping other family members on their toes! Thanks for your insight!

Hi Sue,

I wonder what disorder the DHS person actually researched. Couldn't have been Leigh's. My son Connor turned ten in August. He was diagnosed at 19 months. He is doing well right now. In fact, I actually questioned the diagnosis about a year ago. Dr. Naviaux said there is no doubt that Connor has Leigh's Syndrome. We don't talk about prognosis much, since it varies so much patient to patient. However, he did say Connor should live into his teens, maybe a bit longer. (I'm counting on a LOT longer - he has big plans!)

If I may ask, are you being denied some type of benefits because of this prognosis? Others have given you very helpful documentation, but at least you can add Connor to you survey.

Good luck!

mary b

Connor's mom - 10 years old - Leigh's/COX

[Guest guest]

Wow! Sounds like Conner and Trevor have a few things in common! Trevor will turn ten in July and is doing quite well - considering! He was diagnosed at about four years of age, and has had some pretty tough trials through the years, including spending three weeks in a coma a few years ago. Presently he is doing very well - enjoying school, and keeping other family members on their toes! Thanks for your insight!

Hi Sue,

I wonder what disorder the DHS person actually researched. Couldn't have been Leigh's. My son Connor turned ten in August. He was diagnosed at 19 months. He is doing well right now. In fact, I actually questioned the diagnosis about a year ago. Dr. Naviaux said there is no doubt that Connor has Leigh's Syndrome. We don't talk about prognosis much, since it varies so much patient to patient. However, he did say Connor should live into his teens, maybe a bit longer. (I'm counting on a LOT longer - he has big plans!)

If I may ask, are you being denied some type of benefits because of this prognosis? Others have given you very helpful documentation, but at least you can add Connor to you survey.

Good luck!

mary b

Connor's mom - 10 years old - Leigh's/COX

[Guest guest]

Wow! Sounds like Conner and Trevor have a few things in common! Trevor will turn ten in July and is doing quite well - considering! He was diagnosed at about four years of age, and has had some pretty tough trials through the years, including spending three weeks in a coma a few years ago. Presently he is doing very well - enjoying school, and keeping other family members on their toes! Thanks for your insight!

Hi Sue,

I wonder what disorder the DHS person actually researched. Couldn't have been Leigh's. My son Connor turned ten in August. He was diagnosed at 19 months. He is doing well right now. In fact, I actually questioned the diagnosis about a year ago. Dr. Naviaux said there is no doubt that Connor has Leigh's Syndrome. We don't talk about prognosis much, since it varies so much patient to patient. However, he did say Connor should live into his teens, maybe a bit longer. (I'm counting on a LOT longer - he has big plans!)

If I may ask, are you being denied some type of benefits because of this prognosis? Others have given you very helpful documentation, but at least you can add Connor to you survey.

Good luck!

mary b

Connor's mom - 10 years old - Leigh's/COX