Suffer the little children (genetically)
21 May 2007 by Naomi
This is one of the strangest stories I have ever read! It’s heartbreaking, frustrating, uplifting - in short, it has every element that Hollywood loves! But it’s not fiction.
What it is, is an indictment of, among other things: inbreeding and religion. Not incest - just “closed societies”, marrying only “your own kind”…
(Mennonites are an Anabaptist Protestant church; they trace their origins to the Swiss Brethren [1525]; they first emigrated to North America in 1663, with a large emigration starting in 1683; Horse and Buggy Old Order Mennonites came from the main series of Old Order schisms that began in 1872, and stress closed, “separation from the world.” Old Order Amish is a schismatic offshoot of Mennonism, led by Jacob Amman in 1693; they are also “separate from the world” and adhere to their German language both in the home and in their church services; Amish do not have a sub-sect like the “Automobile Old Order Mennonites”!)
In a rural Pennsylvania small-town, there is a clinic that is cutting-edge: the Clinic for Special Children. It is situated closest to the largest concentration of patients who need it: Mennonite children with Crigler-Najjar syndrome, a rare liver disease that is always fatal - unless a child lives long enough to receive a liver transplant.
There are about 110 known cases of Crigler’s worldwide, including about 35 in the U.S. About 20 are among the Amish and Mennonite in Pennsylvania. There is no medicine that will cure or even control the syptoms. Just the “blue-light boxes” - the children, from infancy, must sleep in the box, uncovered, with a fan blowing on them, to dissipate the heat from the bright blue lights that shine on them all night long.
Crigler-Najjar is not the only genetic disease that the clinic treats. Other rare disorders include; maple syrup urine disease (found only in Mennonites), glutari aciduria (found only in Amish), pigeon breast disease and pretzel syndrome. (You’ll have to read the article to solve the “maple syrup urine” mystery…)
And, still, more babies are born! What is it about fecundity and faith?
In order to afford this medical miracle (albeit a stopgap measure) and the liver transplant up the road and the anti-rejection drugs (for, most likely, the rest of their lives), they have had to overcome their “revulsion” for government assistance. The parents of Amy, age 15, estimate her total medical costs have amounted to over $1 million! Amy’s brother, Derek, 17, had a much easier time with his transplant…
Call me a curmudgeon - but wouldn’t it make sense to be sterilized, if you and/or your spouse had DNA that would kill every child you have? And wouldn’t it make sense to allow some “new blood” into your cult?
For extra credit (and a fascinating read, for the wonky), read Pediatric Medicine and the Genetic Disorders of the Amish and Mennonite People of Pennsylvania, first published in 2003 in the American Journal of Medical Genetics. “Over a 14-year period, 1988-2002, we have encountered 39 heritable disorders among the Amish and 23 among the Mennonites.”
21 May 2007, on 4:49 am
large gene pool idea.
still that raises the question of anything hereditary. deafness for example. nothing to do with religion, but many similar close knit communities naturally marry/’breed’ within that community…
your examples point to an extreme, but the general ‘problem’ exists outside ‘religion’.
3 sets of scare quotes. not a bad effort.
21 May 2007, on 7:18 am
I just don’t get why they need all the medical stuff, shouldn’t god just cure them?
21 May 2007, on 11:05 am
Sure s/he will — after s/he gets over hating amputees!!
21 May 2007, on 11:18 am
That is terrible.
IMHO sterilization is not the answer.
They should be educated (from an early age) as to why they get those diseases, what the risks are of having children and how to have safe sex.
With proper education (from an early age) humans should be able to make the right choices.
21 May 2007, on 1:18 pm
Yeah, ConcernedJoe…I like how the “godhatesamputees” Site points out the fallacy about prayer.
This Mennonite shtick almost sounds like something from a Stephen King novel; just waiting for a screenwriter…erm…
Naomi?
[Compassion, for the moment, aside...]
From the article: “God sent Dr. Morton to us”
Yeah…the same god who’s supposedly the designer of all the myriad disease plagued madness in the world; but who never shows any sign…not even an inkling…of eliminatiing even ONE major disease…
no matter how many people pray for a cure. Then again, nobody attempts to coordinate a massive prayer effort. I think we all know why…yeah…it ain’t gonna work!…and we/they all know it!
Of course…for the ‘fateful’…it’s always ultimately MAN’S fault for it all; no matter how convoluted the situation.
Y’all know the mythological, unjust, sinfullness doctrine attached to THAT idea…Roit?
I’m also tangentially reminded of the almost ‘expected response’ on any news program; you know…the “Thank gawd…yada, yada”…for whatever the story…be it the one person out of whatever number to survive a disaster. Or like last weekend’s two fishermen rescued by the hard work and technological knowhow of dedicated HUMANS; with no mention of them in the news sound-bite comment…just the invisible, magical, but always, apparently impotent, sky-daddy!
This, small religious tribal-like inbreeding story brings up the inevitable evolutionary results of exclusionary marital practices related to strict religious doctrines. Before the advantages resulting from decidedly man-made scientific advances, there would be absolutely no knowledge of what is actually going on regarding the multitude of genetic-based illnesses being suffered in this case. Of course, any help at all; even short of an outright cure, would also be totally unavailable.
?
Oh, but then, the invisible sky-daddy planned all this bullshit…roit?…and doles out, by channelling the relevant doctors..drip by agonizing drip…the little bit of knowledge that gives…JUST ENOUGH techniques…to keep the victims from going home to their precious ‘lawd’.
More unrecognised Sado-Masochism, I say.
But then…I AM a very cynical atheist…yeah, big time!
There really IS a fiction-like, fantasy-horror tale here. But then again…I maintain…
Truth is ALWAYS stranger than fiction!
What’s that, you say?…how ’bout a little movie scene?
Coitenly!
[cue some creepy music...including, perhaps, a theremin-based melody?]:
“Now I lay me down to sleep … I pray the Lawd my soul to keep” …
[Movie Narrator voice mix]: “And, ummm…what’s that about: “if I die, before I wake”?
Say what?…”I’d like to have a Chocolate shake?”
Or…Erm…”I’d like to fuck a Muslim Sheik?”
No?…that’s a little TOO fucking weird?
Hey, it’s Monday; WTF!
21 May 2007, on 2:52 pm
ChuckA, you’re absolutely right! Without medicine, these people’s children would continue to die, thus taking them out of the gene pool. And you will notice that, because they have the excellent Dr. Morton nearby, well, they keep having children that need the light-boxes. Gord knows Mr. Martin isn’t getting rich off making them. And neither is Dr. Morton.
But serious research is being done, with applications for other diseases. (I wonder about the applicability of stem-cells in the treatment.) However, doesn’t that make the children, ultimately, inadvertent guinea pigs?
21 May 2007, on 3:02 pm
Modern, looking at issues and bringing up points about them, especially ones not touched on in the articles, are hardly ’scare tactics”. Ancillary and correlated points are part of the debate. If you don’t want to debate, fine. If you do, make your points in a cogent manner.
However, since I moderated your comment and allowed it because it wasn’t overtly xian, if you are on the brink of drifting into fundie territory, your “moderation approved” status is conditional, and can be cancelled at any time.
Make your points intelligently and we will welcome you to the debate, even if you disagree.
21 May 2007, on 3:11 pm
Hugo, these are Mennonites! While having a greater respect for modern education than the Amish, who don’t go to school beyond the 8th-grade, they’re still more Luddite than enlightened.
Yes, it is.
Just in case you thought I meant “forced sterilization”, I did not. But, as a mother, I would not keep having children after finding out why they were dying. If my DNA was that fatally defective, I would have a hysterectomy. Even though both my son and daughter were born healthy (and are still so), I had my tubes tied in 1972 when I was 26, bucking a medical mindset that said I was too young to make such a monumental decision! All I wanted was to not have the big family I grew up in (six children)…
Even the savvy-by-necessity Martins keep having children. Could it be their religion that keeps them from facing the truth?
More often than not, humans make the right choices when there isn’t the impediment of religion…
21 May 2007, on 3:43 pm
Naomi,
Great points about making the right choices about family planning when religion isn’t involved. My husband and I were just discussing yesterday our thoughts about the whole immigration issue, mostly relating to hispanic immigration. I mentioned that religions (catholic in this particular case)need to take some responsibility for the poverty that is forcing these people to cross the boarders looking for work. Before anyone reminds me about the corruption in the Mexican government, yea I know about that part too. Regardless, if the churches would step up and encourage better family planning the ability of the families to fend for themselves would be better. They need to start encouraging having what you can provide for at the very least, not continuing to have more because that is what god wants. (Yea not that the church wants to increase it’s rolls and bank account).
I had a hysterectomy a few years ago because I didn’t want children, and birth control was causing severe migraines the older I was getting. Talk about difficult, trying to convince my insurance that there would be no possible way I would ever change my mind about breeding. UGH!
21 May 2007, on 4:03 pm
Excellent though sad post, Naomi. As usual, children are the unwitting, helpless victims - in this case, of their parents’ ignorant, backward, narrow-minded faith. A faith that remains blind to the glaring fact that their sky daddy isn’t answering their prayers. This makes me so mad!
21 May 2007, on 4:55 pm
Here in Utah there may be something similar though perhaps less prevalent among the descendants of Mormon pioneers. Recall that the early Mos practiced polygamy within a closed societal group and that even today, members of the LDS faith are strongly urged to marry (and breed)within the church. I have met many Utah couples who were both born and raised in Utah and who can trace both of their family lineages back several generations to early Utah polygamist stock. I would think that people in such a situation would maybe want to do just a little research on their family history before making that big jump. Perhaps this is somehow related to the emphasis that the LDS church places on genealogy research (it is HUGE here in Utah).
I have heard from more than one pediatric-oriented medical service provider in this state that there are an abnormal number of genetic-related syndromes in Utah children and that some of the nation’s premier genetic researchers are camped out here in the land of zion. Perhaps one reason why the Utah Mos have not been as inflicted with genetic abnormalities as the Mennonites is that they have been able to enrich the local gene pool through had an active recruitment program–you know, the famous Mormon missionaries–which, as was pointed out on this website before, is documented very accurately in the movie “Orgazmo.”
21 May 2007, on 5:22 pm
OT warning:
Naomi & Toni,
I was a surrogate (I have some posts very early on in my blog if anyone’s interested) and like you both, I had a lot of “Are you sure?” questions. From EVERYONE.
It gets really old really quick. I know this analogy has been used before, but “I’m old enough to fight for my country but not old enough to decide what to do with my body?” I’m still really bitter about all the doubt from other people.
21 May 2007, on 7:16 pm
This story nearly made me physically sick. We mustn’t ever allow human stupidity to infect childrens lives ever again. This story shows that there might be a ‘hint’ of truth in evolution …
… and why it is important to have diverse gene pool. Human life DEPENDS on how we intermarry.
21 May 2007, on 9:53 pm
So, there’s a STATISTICAL correlation between being a fucked up religious nutjob and genetic diseases. There are diseases that ONLY exist in certain religious populations.
This amuses me, in a black humor sort of way, hehe.
21 May 2007, on 10:06 pm
CB, except for the children, I would be LMAO, too.
This comes under “sins of the father (and mother)”, doesn’t it? And what about “unto the seventh generation” or however it goes?
Yet, they keep makin’ them babies, don’t they! I think, in a conventional encyclopedia, under “cognitive dissonance”, we’d find a picture of christianists and crucifices…
22 May 2007, on 6:48 am
fossilsshowus:
Hey! Fellow Utahn! *waves*
What you are saying is true, especially in the FLDS community. There is a disease called Fumarase Deficiency that is currently very high in their families.
http://deseretnews.com/dn/view/0,1249,635182923,00.html
Very sad that they don’t care enough to let outsiders in to protect their children.
22 May 2007, on 8:16 am
Naomi, this is totally off-topic, but I thought you might be interested in this interview with Kelly Clarkson.
http://www.ew.com/ew/article/0,,20038840_20038841_20038857_3,00.html
She responds to criticisms of here ample figure,
“You look pretty normal to me right now, but people often comment on your weight. [After her performance on the Idol Gives Back charity show last month, one message boarder dubbed her ''Mama Cass.''] Does that bother you?
You’re just like, Oh, well, that sucks. But at the end of the day, it doesn’t suck that much or else I’d do something about it. I work out when I want to work out; I don’t work out when I don’t want to work out. After a long day and I’m tired, yeah, a cookie helps. It makes me feel good. It’s soul food! There’s a reason why it’s called that. I drop, like, 15 pounds when I’m on tour.”
She also talks of misogyny in the music trade,
“We met you on American Idol as a singer who performed other people’s songs. So a lot of people don’t realize you’ve already co-written hits like ”Walk Away” and ”Behind These Hazel Eyes.”
Everybody doesn’t like me writing all the time, no matter how many No. 1’s you write. It’s clearly like yelling at a brick wall. I won an [ASCAP] award recently for best song of the year [for ''Because of You'']. People just refuse to even look at statistics. I mean, is there something higher than No. 1 now? Have they gone to, like, the negatives? People can’t fathom that someone who is vocally talented could have some kind of writing ability.
Why exactly are they so resistant to you writing?
It’s because I’m a woman — because I’m a young woman. I literally heard someone say it [during a conference call]. They didn’t know I was on the phone. Like, really? We’re living in what century? I hung up. I was like, I can’t even address that. ‘Cause that was the most ignorant thing I’ve ever heard.”
Thanks to Feministing for my information.
http://feministing.com/
She seems to have a pretty level head.
Sorry for the digression.
22 May 2007, on 1:42 pm
What kind of life is that? Spending all that time under blue lights?
Why can’t these people just stop breeding, or put some chlorine into that gene pool? I think at this point, they’ve all got to be related to each other. That’s just creepy.
22 May 2007, on 3:20 pm
Thanks, bernarda! It looks like Clarkson has few body-image issues. And recognizes her stressors. Hopefully, yoyo-ing doesn’t bring on Type II diabetes…
Yes, in today’s culture, if you’re young, your opinion doesn’t count and neither does your work. And if you’re a woman, you’re invisible.
Check out this group blog, YOUTHinkLeft. They are aware and activist about the issues…
I LOVE DA ‘TUBES!
22 May 2007, on 7:16 pm
Those are some smart words from Clarkson, bernarda; I myself don’t see her as fat at all, and I haven’t noticed her yo-yoing (but then I don’t follow the entertainment business that closely, either). She looks like a healthy, sexy young woman to me, and would easily receive her share of “va-va-vooms” from the guys in the curve-conscious ’40s and ’50s. It’s nowadays with the fashion and entertainment industries’ emphasis on sick stick figures that people focus on her weight.
And I hope she just blows razzberries at those who assume she can’t write songs!
Marcy, you’re right; they’re all related to each other. Where I went to college in Maryland, out in the boonies 20 minutes from Gettysburg, there was a local community of very closely interrelated people who had been intermarrying - and intercoursing, natch - with each other for several generations.
It showed - scarily.
23 May 2007, on 3:23 am
Good comments, I don’t deny that I don’t know much about Mennonites so they might be educated.
But such a religion can only persist if they are allowed their own education and that was the type of education I was not thinking of.
I’m Belgian and here homeschooling or fundie schooling is unheard of, while there are still wacky people, the religiously wacky tend to be very rare.
And my “With proper education (from an early age) humans should be able to make the right choices” quote was also directed at the religious aspect
23 May 2007, on 6:46 pm
With apologies for anyone having their comments fail to show:
The system is acting up again. I found three regulars in spam (including MYSELF!), two in “awaiting moderation”, as well as a newcomer.
I check both every few hours (except while I’m sleeping) so if someone’s comment doesn’t show up today (and maybe tomorrow, too), it’s probably in the wrong folder.
Arrrgh! I hate when that happens…
24 May 2007, on 9:42 pm
I do not know how I should feel about this. Yes, I know it is costing money but it is adding to the tree of knowledge. Maybe we can learn more about ourselves that can benefit us as a whole.
25 May 2007, on 2:06 am
Myron, perhaps that is the passive silver-lining in that whole mess; however, these are children that are looking at a lifetime of pain and living a life guarding against the slightest infection.
If you have one child suffering from the parents’ defective DNA, isn’t that a great enough contribution to research? Why have (at least) two more: Derek, Amy and baby Dorothy (above), consciously sentencing them to a lifelong struggle that could have been avoided - but wasnt’ because Gord “said”: Go forth and multiply?
Remember that at the time that book was “authored”, there were many fewer people and life expectancies were short. Times have changed; now we have too many people with long life expectancies!
Oh, what the hell, we’re probably past the “tipping point” already. It’s too late for thinking about a sane population-level…
27 May 2007, on 7:56 pm
I see where your coming from. The only way I can see us controlling population is by castrating the people that give the gene pool a huge negative.
As with this case the people should not be interbreeding because the genes are not diverse. Diversity is key but everyone seeks uniformity.
Is there a balance in this whole mess.