Re: Re: Leigh's disease

[Guest guest]

Hello ,

My name is Valina and my daughter has Leigh's she was diagnosed at 7mos and she is now 31mos. I live in California but I would like to offer my support to you please feel free to email me at vcombs@... we all need as much support as we can get.

Valinamedea_moonstone wrote:

I'm sorry I can't offer much in the way of advice as I am not familiar with that area at all. (I'm Canadian, eh...) But, I would like to offer my support. If your friend would like to talk to an other mother who is parenting a child with Leigh's disease, please give her my e-mail address. While mito isn't really all that rare, I have yet to make contact with an other family who is dealing with Leigh's. Donovan and Tarok(20months)> Hi all,> > I am an adult with mito and have been on this site for many years, mostly as > a lurker.. My daughter is also suspected to have mito but is only mildly > symptomatic thankfully. I am hoping you guys can help me with a friend. Her > little girl who just turned 2 was just diagnosed

with Leighs. Her brother died > from the same disease 3 years ago. Her mom isn't handling it very well which I > guess is to be expected. I have e-mailed her the UMDF site and told her about > the mito group. I am also looking for people in the Southwest Florida > (Sarasota) area who might be able to offer resources. From what I know, Hannah has > had several seizures recently and has lost much of her eyesight. She doesn't > appear to be doing well although I'm not fully sure of her condition. I know > they were looking for some kind of service to help them through this. I was > wondering what others in this situation have done. Can you guys give me any > advice on how to help the mom? I think she is nearing her breaking point and we > want to do anything we can to help but don't really know how. I was

shocked > to find out it was mito. What are the chances that we would both have this > terrible disease with the same complex deficiencies. I guess it may be more > common than we think. I would appreciate any help you can give me.> > 2Please contact mito-owner with any problems or questions.

[Guest guest]

Hi Valina,

Where in California do you live? I have a 10 year old son with Leigh's and we live in Ventura.

mary b

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

Re: Re: Leigh's disease

Hello ,

My name is Valina and my daughter has Leigh's she was diagnosed at 7mos and she is now 31mos. I live in California but I would like to offer my support to you please feel free to email me at vcombs@... we all need as much support as we can get.

Valinamedea_moonstone wrote:

I'm sorry I can't offer much in the way of advice as I am not familiar with that area at all. (I'm Canadian, eh...) But, I would like to offer my support. If your friend would like to talk to an other mother who is parenting a child with Leigh's disease, please give her my e-mail address. While mito isn't really all that rare, I have yet to make contact with an other family who is dealing with Leigh's. Donovan and Tarok(20months)> Hi all,> > I am an adult with mito and have been on this site for many years, mostly as > a lurker.. My daughter is also suspected to have mito but is only mildly > symptomatic thankfully. I am hoping you guys can help me with a friend. Her > little girl who just turned 2 was just diagnosed with Leighs. Her brother died > from the same disease 3 years ago. Her mom isn't handling it very well which I > guess is to be expected. I have e-mailed her the UMDF site and told her about > the mito group. I am also looking for people in the Southwest Florida > (Sarasota) area who might be able to offer resources. From what I know, Hannah has > had several seizures recently and has lost much of her eyesight. She doesn't > appear to be doing well although I'm not fully sure of her condition. I know > they were looking for some kind of service to help them through this. I was > wondering what others in this situation have done. Can you guys give me any > advice on how to help the mom? I think she is nearing her breaking point and we > want to do anything we can to help but don't really know how. I was shocked > to find out it was mito. What are the chances that we would both have this > terrible disease with the same complex deficiencies. I guess it may be more > common than we think. I would appreciate any help you can give me.> > 2Please contact mito-owner with any problems or questions. Please contact mito-owner with any problems or questions.

[Guest guest]

Hi ,

We live in Sacramento. When was your son diagnosed? and are you on DCA?

Valinamary wrote:

Hi Valina,

Where in California do you live? I have a 10 year old son with Leigh's and we live in Ventura.

mary b

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

Re: Re: Leigh's disease

Hello ,

My name is Valina and my daughter has Leigh's she was diagnosed at 7mos and she is now 31mos. I live in California but I would like to offer my support to you please feel free to email me at vcombs@... we all need as much support as we can get.

Valinamedea_moonstone wrote:

I'm sorry I can't offer much in the way of advice as I am not familiar with that area at all. (I'm Canadian, eh...) But, I would like to offer my support. If your friend would like to talk to an other mother who is parenting a child with Leigh's disease, please give her my e-mail address. While mito isn't really all that rare, I have yet to make contact with an other family who is dealing with Leigh's. Donovan and Tarok(20months)> Hi all,> > I am an adult with mito and have been on this site for many years, mostly as > a lurker.. My daughter is also suspected to have mito but is only mildly > symptomatic thankfully. I am hoping you guys can help me with a friend. Her > little girl who just turned 2 was just diagnosed

with Leighs. Her brother died > from the same disease 3 years ago. Her mom isn't handling it very well which I > guess is to be expected. I have e-mailed her the UMDF site and told her about > the mito group. I am also looking for people in the Southwest Florida > (Sarasota) area who might be able to offer resources. From what I know, Hannah has > had several seizures recently and has lost much of her eyesight. She doesn't > appear to be doing well although I'm not fully sure of her condition. I know > they were looking for some kind of service to help them through this. I was > wondering what others in this situation have done. Can you guys give me any > advice on how to help the mom? I think she is nearing her breaking point and we > want to do anything we can to help but don't really know how. I was

shocked > to find out it was mito. What are the chances that we would both have this > terrible disease with the same complex deficiencies. I guess it may be more > common than we think. I would appreciate any help you can give me.> > 2Please contact mito-owner with any problems or questions. Please contact mito-owner with any problems or questions. Please contact mito-owner with any problems or questions.

[Guest guest]

Hi Valina,

I have a sister-in-law in Rancho Dominguez and a sister in Live Oak (near Yuba City). Maybe we will meet someday!

Connor was diagnosed with Leigh's Syndrome at 19 months, and Complex IV defeciency at a little over 3 years old. He has been on DCA since June 1996 and his lactic acid levels have actually been on the low side of normal since then. I have wondered how much of it is due to the DCA and how much to the diet change. We learned at UCSD that he does not tolerate fructose or sucrose and changed his diet at the same time as starting DCA. We have lowered the dosage and his lactic acid levels remain good.

Is your daughter on DCA? How is she doing? By the way, Valina is a beautiful name. What nationality is that?

mary b

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

Re: Re: Leigh's disease

Hello ,

My name is Valina and my daughter has Leigh's she was diagnosed at 7mos and she is now 31mos. I live in California but I would like to offer my support to you please feel free to email me at vcombs@... we all need as much support as we can get.

Valinamedea_moonstone wrote:

I'm sorry I can't offer much in the way of advice as I am not familiar with that area at all. (I'm Canadian, eh...) But, I would like to offer my support. If your friend would like to talk to an other mother who is parenting a child with Leigh's disease, please give her my e-mail address. While mito isn't really all that rare, I have yet to make contact with an other family who is dealing with Leigh's. Donovan and Tarok(20months)> Hi all,> > I am an adult with mito and have been on this site for many years, mostly as > a lurker.. My daughter is also suspected to have mito but is only mildly > symptomatic thankfully. I am hoping you guys can help me with a friend. Her > little girl who just turned 2 was just diagnosed with Leighs. Her brother died > from the same disease 3 years ago. Her mom isn't handling it very well which I > guess is to be expected. I have e-mailed her the UMDF site and told her about > the mito group. I am also looking for people in the Southwest Florida > (Sarasota) area who might be able to offer resources. From what I know, Hannah has > had several seizures recently and has lost much of her eyesight. She doesn't > appear to be doing well although I'm not fully sure of her condition. I know > they were looking for some kind of service to help them through this. I was > wondering what others in this situation have done. Can you guys give me any > advice on how to help the mom? I think she is nearing her breaking point and we > want to do anything we can to help but don't really know how. I was shocked > to find out it was mito. What are the chances that we would both have this > terrible disease with the same complex deficiencies. I guess it may be more > common than we think. I would appreciate any help you can give me.> > 2Please contact mito-owner with any problems or questions. Please contact mito-owner with any problems or questions. Please contact mito-owner with any problems or questions. Please contact mito-owner with any problems or questions.