Re: Can anyone help me? (mentions death and stuff)

[Guest guest]

My didn't have a known FOD but possibly a luekodystrophy in addition to the mito. He had it in practically every complex...I and IV, I+III and II+III...however, his brain was very affected and progressively so until he died. The horrible thing (among many other things) about mito is that since its in the cells, there is no predictable pattern or sequence of things.

Some mito kids do lose their hearing and vision before they die, but I dont think you could nail that down on any specific complexes.

went outside and wanted to participate in yardwork (although he only carries one stick to the curb and then watched) less than 48 hours before he died. He had not been eating as well but had a two hamburgers and strawberries 36 hours before he died. No one could have predicted that he wouldn't wake up the next day and that he would die that next morning. Some mito kids go through months of their parents being told 'this is it' and they hang on...so who knows?

I think the best advice I can give you is to listen to your own voice. I truly believe all moms who face terminal illnesses know if and when (there abouts) their child is going to go...and there is a beauty in that and in recognizing the opportunity to love them all the more...wide, hard, deep and intensely! Cherish everything you can and take lots of pictures...and remember you never know what will happen tomorrow (and I mean that in a positive-miracle way).

I would be happy to talk with you by phone. Just email me privately if you are interested in that. I do have one friend who has a child who had a similar biopsy...but when its frozen you never know if it is a really clear picture of everything or not.

deb...mom to four great kids and wife to one amazing guy!www.LifeofLoveProject.orgwww.debwells.com

[Guest guest]

My didn't have a known FOD but possibly a luekodystrophy in addition to the mito. He had it in practically every complex...I and IV, I+III and II+III...however, his brain was very affected and progressively so until he died. The horrible thing (among many other things) about mito is that since its in the cells, there is no predictable pattern or sequence of things.

Some mito kids do lose their hearing and vision before they die, but I dont think you could nail that down on any specific complexes.

went outside and wanted to participate in yardwork (although he only carries one stick to the curb and then watched) less than 48 hours before he died. He had not been eating as well but had a two hamburgers and strawberries 36 hours before he died. No one could have predicted that he wouldn't wake up the next day and that he would die that next morning. Some mito kids go through months of their parents being told 'this is it' and they hang on...so who knows?

I think the best advice I can give you is to listen to your own voice. I truly believe all moms who face terminal illnesses know if and when (there abouts) their child is going to go...and there is a beauty in that and in recognizing the opportunity to love them all the more...wide, hard, deep and intensely! Cherish everything you can and take lots of pictures...and remember you never know what will happen tomorrow (and I mean that in a positive-miracle way).

I would be happy to talk with you by phone. Just email me privately if you are interested in that. I do have one friend who has a child who had a similar biopsy...but when its frozen you never know if it is a really clear picture of everything or not.

deb...mom to four great kids and wife to one amazing guy!www.LifeofLoveProject.orgwww.debwells.com