Re: [Fwd: LI Noe: Update]
"Mike" [EMAIL PROTECTED] writes:
Hi Folks,
I want to thank all of you for the opportunity to participate in this
thread, especially Kathy. I'm a wee bit out of my element here as far as
law issues goes, so I'm going to unsubscribe, but I wanted to make sure
that you folk were aware that I was pleased with being able to discuss the
Noe case with you.
Kathy wrote:
---
The one thing everyone should remember is though the links given are
quite interesting, not everyone has web access so they can't read the
snip
---
Ouch... I keep forgetting that, thanks for the reminder, Kathy.
---
snip
confessed and why people should forget about the confession, it seems
some here have decided to forget the confession.
---
I hadn't forgotten about Marie's confession, but I kept in mind that mito
folk can become quite paranoid and delusional from the deterioration of the
brain. A confession would not have been out of line in this light, and
quite understandable.
---
IMHO to use her case and circumstances as a possible way of enlightening
people to mitochondria is not a example I personally would do,
snip
---
If I gave the impression that this was my goal, Kathy, I humbly apologize.
While I realized that there would be some exposure in the course of getting
involved with the Noe case, it was never my intention of using my
involvement to bring public attention to mitochondrial disorders (or Dr.
Naviaux's either, I would hope.)
If no one minds, I'll stay subscribed until tonight, and unsubscribe after
9:00 PM EST (US), just in case someone would like to respond to this post.
Thanks for allowing me in, and for sharing your views. :-)
TTFN
Mike [EMAIL PROTECTED]
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Re: [Fwd: LI Noe: Update]
"Mike" [EMAIL PROTECTED] writes:
Hi Sue,
It's very common for children with mito disorders to appear perfectly
healthy for a time, anywhere from a few days to 11 or 12 years (in my
wife's case, she had no obvious symptoms until the age of 26.) Children
with these disorders can exhibit a wide or narrow range of a large group of
symptoms, most of which can vary from very slight to life threatening.
There's such a wide range of disorders that stem from mitochondrial
problems (cerebal palsy, for instance is one of them), that the ratio of
someone having a mito disorder is believed to be just 1 in 4000.
Granted, 10 is the largest number of children that I've heard of possibly
being lost due to a mito disorder, but I can also see where this could
possibly happen due to the unique circumstances. The Noes hold to the
beliefs of the Catholic church, so no birth control was practiced short of
abstinence. Back in the 60's and 70's, mito disorders were unknown (when
Karen, my wife, was diagnosed, there were fewer than 30 cases diagnosed
world-wide; and this was in 1987), and genetics was an infant science. If
there was a mito disorder involved, it could have very well taken the life
of each of the children, and yet have been overlooked by the best medical
minds available back then to the authorities. Even Mrs. Noe's apparent
mental instability can be explained by the presence of a mito disorder.
All this aside, I agree that all of the angles need to be examined, mito
disorder or not.
My personal concern stems from seeing all of the harassment that our own
folk go through with medical professionals who still don't know enough
about mito disorders. Some of them have even been accused of
abusing/neglecting their children. I just want the Noe's to get a fair
shake.
TTFN
Mike [EMAIL PROTECTED]
--
Hi Kathy and Mike:
I don't know what to think about this. I really don't. I guess there
is a very good chance that this could be the answer, but what about the
two that lived until they got home and then died within a very short
snip
---
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Re: LI Sunday's jokes
"Mike" [EMAIL PROTECTED] writes:
Hi Sue,
Out of curiosity, is this a regular feature of the list?
TTFN
Mike [EMAIL PROTECTED]
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Re: [Fwd: LI Noe: Update]
"Mike" [EMAIL PROTECTED] writes: Hi Ron, Mito disorders aren't "EXTREMELY" rare, just not diagnosed. 1 in 4000 is more common than pediatric cancer. Studies have shown that even aging is a process of the mitochondrial functions breaking down (Doug Wallace, Emory in Atlanta.) Because of this misconception, we've had parents put through horrendous situations by ignorant physicians who thought that they were 100% correct in their (mis)diagnosis. Folks have died as a result of this, we have children with permanent physical damage, and others have emotional scars that will take halfway to forever to heal because of well-meaning medical/social/protection services workers. TTFN Mike [EMAIL PROTECTED] -- There is also a commonly used phrase in medicine, used to emphasize the fact that common things are common, rare things are rare. Child abuse is VERY common, mitochondrial disease is EXTREMELY rare. "When you hear the sounds of galloping hooves, think of horses, not zebras! Ron --- Subscribe/Unsubscribe, email: [EMAIL PROTECTED] In the body of the message enter: subscribe/unsubscribe law-issues
Re: [Fwd: LI Noe: Update]
"Mike" [EMAIL PROTECTED] writes: Ron wrote: --- snip disease, and None of them would have been normal. My wife and I, in our combined 50 years of caring for newborns have seen only one child with this rare disorder, and the child was so sick that it died in the NICU, and was diagnosed at autopsy. These mitochondrial syndromes are being used to explain all of the disorders like Chronic Fatigue Syndrome, fibromyalgia, you name it. Blame your problems on "free radicals" mentality. No one wants to admit that some crazy woman killed all of her children. I doubt that exhumed tissues would be able to show whether any of these children had mitochondrial syndrome. --- Ron, You might find it interesting to visit our website (address below in my signature). I've been dealing with mitochondrial disorders since 1982, and would never make a statement about mito disorders without solid evidence to back it up. I'm surprised that you based your conclusions on just that one child's diagnosis. There's a search results webpage at our website that includes 450 links to mito-related webpages, a page with links to other excellent mito-related websites, and downloadable PDF-format files on MELAS, the mito disorder that took my wife's life (and possibly the lives of three of our children, all at birth or just prior to it), and a short version of my wife's medical history. We have 127 families in our support listserv, the MMRD-List, quite a few with multiple children and the mother affected by their particular mito disorder. ... and ,yes, it would be well nigh impossible to exhume the bodies and diagnose a mito disorder. Please pardon the full signature... TTFN Mike Jackson, Director/Administrator --- MELAS Online Network the Following Listservs: MMRD-List -=- KIDS_MMRD-List -=- MITO_NET-List Dad to Mike, a tiggerrific son (11 nda), two Gerbils a Bunny Email: [EMAIL PROTECTED] - AOL IM ID: Mike MMRD MELAS Online Network: http://www.melas.org Subscribe/Unsubscribe, email: [EMAIL PROTECTED] In the body of the message enter: subscribe/unsubscribe law-issues
Re: [Fwd: LI Noe: Update]
"Mike" [EMAIL PROTECTED] writes: Hi Ron, Just saw your post about your "downsizing" experience, and realized that I was explaining things to someone who already knows far more than I about genetics. Sorry 'bout that. TTFN Mike [EMAIL PROTECTED] Subscribe/Unsubscribe, email: [EMAIL PROTECTED] In the body of the message enter: subscribe/unsubscribe law-issues
