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

[Guest guest]

Sue miller my name is shannon and i had a child that had lieghs disease and it is very terminal i was told it was fatal in the first year of life ... i dont understand but i do know that it is differant in every one some go quick some can last alittle longer but unforntinatly mine didnt last but six monthes eight days and here is her website if it helps any at all it does tell you every thing about her execept that she dinol. by a simple mri showing there was swelling in the steam of the brain then she went into alot of seizures so it is really differant in every body and that is so sad but it will always be a terminal thing its all up to the person that has it ... i think it is harder on the younger ones cause brandy was not alound to have her shots when she was born cause her latic acid levels was way to high and some times lieghs disease would move more rapidly which it did on my little brandy ... but she is in a better place know .. but i will be praying for your little young man and please let him know the truth so he can protect himself from any kind of infections cause brandy didnt get real bad til she caught a head cold and a chest infection... but i will defintly pray for this child like i do the rest of them and god bless you ...here is her web site if you would like to read it .. http://brandymichelle.cjb.net/

your friend shannon tracy

November 07,. 2002

May 15, 2003

[Guest guest]

Sue miller my name is shannon and i had a child that had lieghs disease and it is very terminal i was told it was fatal in the first year of life ... i dont understand but i do know that it is differant in every one some go quick some can last alittle longer but unforntinatly mine didnt last but six monthes eight days and here is her website if it helps any at all it does tell you every thing about her execept that she dinol. by a simple mri showing there was swelling in the steam of the brain then she went into alot of seizures so it is really differant in every body and that is so sad but it will always be a terminal thing its all up to the person that has it ... i think it is harder on the younger ones cause brandy was not alound to have her shots when she was born cause her latic acid levels was way to high and some times lieghs disease would move more rapidly which it did on my little brandy ... but she is in a better place know .. but i will be praying for your little young man and please let him know the truth so he can protect himself from any kind of infections cause brandy didnt get real bad til she caught a head cold and a chest infection... but i will defintly pray for this child like i do the rest of them and god bless you ...here is her web site if you would like to read it .. http://brandymichelle.cjb.net/

your friend shannon tracy

November 07,. 2002

May 15, 2003

[Guest guest]

Sue miller my name is shannon and i had a child that had lieghs disease and it is very terminal i was told it was fatal in the first year of life ... i dont understand but i do know that it is differant in every one some go quick some can last alittle longer but unforntinatly mine didnt last but six monthes eight days and here is her website if it helps any at all it does tell you every thing about her execept that she dinol. by a simple mri showing there was swelling in the steam of the brain then she went into alot of seizures so it is really differant in every body and that is so sad but it will always be a terminal thing its all up to the person that has it ... i think it is harder on the younger ones cause brandy was not alound to have her shots when she was born cause her latic acid levels was way to high and some times lieghs disease would move more rapidly which it did on my little brandy ... but she is in a better place know .. but i will be praying for your little young man and please let him know the truth so he can protect himself from any kind of infections cause brandy didnt get real bad til she caught a head cold and a chest infection... but i will defintly pray for this child like i do the rest of them and god bless you ...here is her web site if you would like to read it .. http://brandymichelle.cjb.net/

your friend shannon tracy

November 07,. 2002

May 15, 2003

[Guest guest]

hi sue,

i have a 4 yr. old daughter, dx with leighs and we have a family

friend whose child died of leighs at age 3 1/2 yrs.

for more info on him you can visit:

wwww.wishuponacure.org

hope this helps, please feel free to email with more questions.

bethany

mom to brennan 6, palmer & anna grace (leighs) 4

> 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]

hi sue,

i have a 4 yr. old daughter, dx with leighs and we have a family

friend whose child died of leighs at age 3 1/2 yrs.

for more info on him you can visit:

wwww.wishuponacure.org

hope this helps, please feel free to email with more questions.

bethany

mom to brennan 6, palmer & anna grace (leighs) 4

> 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]

hi sue,

i have a 4 yr. old daughter, dx with leighs and we have a family

friend whose child died of leighs at age 3 1/2 yrs.

for more info on him you can visit:

wwww.wishuponacure.org

hope this helps, please feel free to email with more questions.

bethany

mom to brennan 6, palmer & anna grace (leighs) 4

> 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]

Sue miller,

I just went online and looked up prognosis for leighs disease and

got this website. I hope this helps

http://www.icomm.ca/geneinfo/leighs.htm

Dawn

[Guest guest]

Great site -- Thanks! I have learned most of what I know about Leigh's from the internet, but have certainly never found the info that the DHS person claims to! Wonder if she actually looked.....!!

Sue miller, I just went online and looked up prognosis for leighs disease and got this website. I hope this helps http://www.icomm.ca/geneinfo/leighs.htm Dawn

[Guest guest]

Great site -- Thanks! I have learned most of what I know about Leigh's from the internet, but have certainly never found the info that the DHS person claims to! Wonder if she actually looked.....!!

Sue miller, I just went online and looked up prognosis for leighs disease and got this website. I hope this helps http://www.icomm.ca/geneinfo/leighs.htm Dawn

[Guest guest]

Great site -- Thanks! I have learned most of what I know about Leigh's from the internet, but have certainly never found the info that the DHS person claims to! Wonder if she actually looked.....!!

Sue miller, I just went online and looked up prognosis for leighs disease and got this website. I hope this helps http://www.icomm.ca/geneinfo/leighs.htm Dawn

[Guest guest]

Perhaps you could ask this DHS person if she would mind printing out the

information that she found ..... you would LOVE to have something that would

give you more hope! You might also request the doctor to write something

about the prognosis of Leigh's ... and give this to DHS>

Jean

Sue wrote:

Great site -- Thanks! I have learned most

of what I know about Leigh's from the internet, but have certainly never

found the info that the DHS person claims to! Wonder if she actually looked.....!!

Sue miller,

I just went online and looked up prognosis for leighs disease and

got this website. I hope this helps

http://www.icomm.ca/geneinfo/leighs.htm

Dawn

Please contact mito-owner with any problems or questions.

[Guest guest]

Sue,

I had the same problem that you are having, My daughter is 2 and was dx at 7 mos. None of the DHS would help me until I had Dr. Barshop at UCSD arite us a letter and then sending information about their website at.

www.biochemgen.ucsd.edu/mmdc/lcc01.htmGood Luck to you,

Valina Combs Mother of MargaretSue wrote:

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 Please contact mito-owner with any problems or questions.

[Guest guest]

Sue,

I had the same problem that you are having, My daughter is 2 and was dx at 7 mos. None of the DHS would help me until I had Dr. Barshop at UCSD arite us a letter and then sending information about their website at.

www.biochemgen.ucsd.edu/mmdc/lcc01.htmGood Luck to you,

Valina Combs Mother of MargaretSue wrote:

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 Please contact mito-owner with any problems or questions.

[Guest guest]

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

-- Original Message -----

From: Sue

To: Mito

Sent: Monday, January 05, 2004 3:17 PM

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

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 Please contact mito-owner with any problems or questions.

[Guest guest]

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

-- Original Message -----

From: Sue

To: Mito

Sent: Monday, January 05, 2004 3:17 PM

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

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 Please contact mito-owner with any problems or questions.

[Guest guest]

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

-- Original Message -----

From: Sue

To: Mito

Sent: Monday, January 05, 2004 3:17 PM

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

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 Please contact mito-owner with any problems or questions.

[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