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Forums > Social Discussion > Messing with Nature... I guess you could call it

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GitasGuy


GitasGuy

Pooh-Bah
Location: Brisbane

Total posts: 2303
Posted:Disabled girl's growth medically stunted
Thursday Nov 2 11:34 AEDT
In a report published in a medical journal this month, two doctors describe a 6-year-old girl with profound, irreversible developmental disability who was given high doses of estrogen to permanently halt her growth so that her parents could continue to care for her at home.

The controversial growth-attenuation treatment, which included hysterectomy, was requested by the child's parents and initiated after careful consultation and review by an ethics committee.

In their report in the Archives of Pediatrics and Adolescent Medicine, Drs. Daniel F. Gunther and Douglas S. Diekema, both at the University of Washington in Seattle, explain the reasoning behind what they hope will generate a healthy debate. Gunther is at the Division of Pediatric Endocrinology, and Diekema is at the Center for Pediatric Bioethics.

Caring for children with profound developmental disabilities can be difficult and demanding, they note. For children with severe combined neurologic and cognitive impairment who are unable to move without assistance, all the necessities of life - dressing, bathing, transporting - must be provided by caregivers, usually parents, and these tasks become increasing difficult, if not impossible, as the child increases in size.

"Achieving permanent growth attenuation while the child is still young and of manageable size would remove one of the major obstacles to family care and might extend the time that parents with the ability, resources, and inclination to care for their child at home might be able to do so," Gunther and Diekema write.

The parents of the 6-year-old, both of whom were college-educated professionals, indicated a strong desire to continue caring for their daughter. Despite having the neurologic development no greater than that of an infant, the 6-year-old responds to her parents and two healthy siblings -- vocalizing and smiling in response to care and affection -- and "clearly is an integral, and much loved, member of the family," the authors note.

After extensive evaluation, the combined opinion of a team of specialists is that the child will have no significant neurologic or cognitive improvements.

The onset of puberty and continued growth caused concern in the parents about how they would care for their daughter long-term, which they clearly wanted to do. They were concerned about having to turn over care to "strangers" and also about the complications that would arise when the child started menstruating.

The child is now a little more than a year into growth-attenuating therapy and approaching the end of her growth, Gunther and Diekema report. "As of yet, there have been no treatment complications."

The authors feel that growth arresting therapy can be "both ethical and feasible and should be an option available to parents."

The authors of a commentary applaud Gunther and Diekema for publishing this case report, although they believe that attempts to attenuate growth are "ill advised."

Nonetheless, Dr. Jeffrey P. Brosco from the University of Miami and Dr. Chris Feudtner from the University of Pennsylvania, Philadelphia, say that by beginning the debate, this paper helps to "advance our ethical dialogue as we struggle to define our core values in words, laws, and deeds. Only with further research and public discussion will we learn whether attempts to attenuate growth run with or against our fundamental values in caring for children with profound developmental disabilities."

SOURCE: Archives of Pediatrics and Adolescent Medicine, October 2006.

Hoppers i just found this on my local MSN news. And i don't know how i feel about such a use/abuse of medical treatments. confused

Where does this line of treatment differ from stem cell research, which i believe (with minimal amount of knowledge i admit) could one day fix the original problem with this young girl.
Ok so my question is, is this treatment moraly right? or should this child be left to "survice" without any frankenstein like treatments just to make her parents job easier!!


:admires giant wooden aeroplane: Its about time trees were good for something, instead of just standing their like jerks!!! ubblol ubbtickled

Homer rocks!!!! ubblol ubbrollsmile

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Bek66


Bek66

Future Mrs Pogo
Location: The wrong place

Total posts: 4728
Posted:I am appalled!!! Did the parents ever stop to think that maybe there was a reason why they were given this child by the natural order? Instead of caring for her as she would become and acquiring some compassion and patience which maybe the laws of nature decided that they needed, they took a drastic measure with a human spirit.

I believe that everything happens with purposeful intention...now noone will ever know what the reason was for this childs condition. Helen Keller hardly knew she was in the world as a small child but later became an inspiration for overcoming seemingly insurmountable adversities!

I don't know what else to say except that I am ashamed that these medical *geniuses* are from my country!!!


"Absence is to love what wind is to fire...it extinguishes the small, enkindles the great."
--Comte Debussy-Rebutin

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GitasGuy


GitasGuy

Pooh-Bah
Location: Brisbane

Total posts: 2303
Posted:It does seem like a very disturbing decision that these parents have made. I know life caring for someone with a disability is tough on people. But like you say bek these are the cards we are dealt and you live and cope with them. To have some doctor stunt your child so she is easier to dress. And to perform a hysterectomy so they don't have to deal with puberty is just astounding. They say this couple are well educated, professional people.... well i'd think if you were well educated you couldn't possible make such a desicion to mutulate your child!!! frown

:admires giant wooden aeroplane: Its about time trees were good for something, instead of just standing their like jerks!!! ubblol ubbtickled

Homer rocks!!!! ubblol ubbrollsmile

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Bek66


Bek66

Future Mrs Pogo
Location: The wrong place

Total posts: 4728
Posted:It just hurts my heart. ubbcrying

"Absence is to love what wind is to fire...it extinguishes the small, enkindles the great."
--Comte Debussy-Rebutin

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Dentrassi
GOLD Member since Apr 2003

Dentrassi

ZORT!
Location: Brisbane, Australia

Total posts: 3044
Posted:i appreciate its a tough ethical dilemma - with lots of emotion involved - but i do understand the parents perspective.



the family across the road from where my family lived for 20 years has a girl (about my age i think) with severe cerebal palsy.

from the physical perspectiveshe cannot even roll on her side, let alone sit up, and mentally not much different. she recognizes family members, can smile, but thats about it. spends much of her time staring at the ceiling. She has the instinct of understanding food - but cannot chew. basically she is as developed as a 2 months old baby, if that.



her parents are loving christian types who will no doubt care for her as long as she live.



my recollection of events (this was a few years ago) is they wanted to have a hysterectomy performed - with a few other operations(which names elude me) - basically to cease the mentrual cycle & sexual function.. interrupting the natural order of things perhaps - but they had to listen to the screams of their daughter everytime the monthly cycle came around. she doesnt understand - she barely has the mental function to chew.



they were told rather bluntly that they would have to go to court to get the procedure approved, and have some youthful right-to-lifer whose never had to care to a sick child in his her life, abuse them for being terrible parents/destroying a childs life etc... they simply decided that entire process would be too emotionally traumatic to go through.



they have all the compassion & patience in the world - they've cared for her something like 25 years? they want to care for their child - but nothings worse that seeing your child in pain - especially when you can do nothing about it.



the stunting growth thing im a bit unsure about - though.



is it more important to leave our kids to the natural order? or to save them from pain? its a question i hope i never have to deal with.



this topic is the veritable hotpot of ethics & emotion - i expect some interesting replies.



E.

EDITED_BY: Dentrassi (1162438946)


"Here kitty kitty...." - Schroedinger.

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GitasGuy


GitasGuy

Pooh-Bah
Location: Brisbane

Total posts: 2303
Posted:You make a very good point about the hysterectomy side Ed. Being as that is an acceptable procedure for "normal" woman to and i can sort of understand that.
But then i would also point out if like your neighbours case is that the child only has the mentality of a 2 month old and i don't think the girl in the stories is much more than that, do they really feel/know its pain or even remember it after its stopped. Is it more the parents know what the child should be feeling and that makes them sad and feel helpless?

The stunting the growth just so its easier to dress the child i cannot get my head around. That just seems like cruelty!!


:admires giant wooden aeroplane: Its about time trees were good for something, instead of just standing their like jerks!!! ubblol ubbtickled

Homer rocks!!!! ubblol ubbrollsmile

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wonderloey


wonderloey

enthusiast
Location: Melbourne - home of pirates

Total posts: 255
Posted:A lot of parents with severely disabled children are under massive stress. I'm not a parent myself, but I am continually gobsmacked by the levels of patience and work that goes into raising a child.

Anyone who's had to care for a toddler knows that often its a battle of wills. They have a mind of their own, and getting them to do what they need to do can be bloody difficult at the best of times.

Now, imagine devoting the rest of your life to looking after a three year old. You get older, tireder, more stressed. Your child never grows up. You gain immense joy from parenting, but you never see your child develop and grow.

As you get older, and more frail, your child gets stronger and bigger. You want to look after him or her but don't have the strength to bathe a fully grown adult like you would a baby. You don't want to surrender your child to a home (in Australia there is severe lack of nursing homes for intellectually disabled people, and most end up in a room full of old people) but you simply can't look after him or her.

Fyrespirit, it hurts my heart too. When an adult is simply not capable of determining their own destiny, how are we to treat them?

I know a couple of families who face these issues. I don't know the answers. I really wish I did.


"You've gone from Loey the Wonder Lesbian to everyone wondering if you are a lesbian." - Shadowman

Yesterday is yesterday. If we try to recapture it, we will only lose tomorrow.

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jeff(fake)


jeff(fake)

Scientist of Fortune
Location: Edinburgh

Total posts: 1189
Posted:Based on what I know of the case, I fully support the parents in this one. Her "natural" developement would have resulted in her care becoming increasingly difficult. Ultimately her parents would be unable to care for her which would be distressing for all concerned. By putting a stop to her growth this gets prevented. Thus the child will be happier, and the parents will be happier. Why object to that?

According to Heisenberg's Uncertainty Principle of Quantum Dynamics, we may already be making love right now...

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Bek66


Bek66

Future Mrs Pogo
Location: The wrong place

Total posts: 4728
Posted:There is NOTHING that will ever be happy about this situation until this child moves on from this lifetime and her spirit is able to enter the next....the parents don't deserve her.

"Absence is to love what wind is to fire...it extinguishes the small, enkindles the great."
--Comte Debussy-Rebutin

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Stout
SILVER Member since May 2004

Stout

Pooh-Bah
Location: Canada

Total posts: 1872
Posted:I'm coming out in support of the parents myself, mostly for reasons already outlined on this thread. I take my hat off to the parents for going this route, rather than simply dropping their daughter off at some institution and forgetting her.

Fyrespirit, they took a "drastic measure" with a human body, not a human spirit.


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Bek66


Bek66

Future Mrs Pogo
Location: The wrong place

Total posts: 4728
Posted:And I HAD to have drastic measures taken with my human body and it has forever affected my human spirit.....we'll just have to agree to disagree on this one.

No offense meant to anyone here...I just hate to think of what this child might really be feeling inside...it gives me a sense of such sorrow and anger...but unfortunately noone can know what she feels...individual conscioussness is non-transferable.


"Absence is to love what wind is to fire...it extinguishes the small, enkindles the great."
--Comte Debussy-Rebutin

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Flamez
BRONZE Member since Jun 2006

Flamez

member
Location: Cape Town The Mother City, Sou...

Total posts: 56
Posted:I have a disabled brother. He only stardet to walk after his 8th birthday. When he was three the doctors told my mother that her child would never be able to stand on his own let alone walk. He is turning 21 early next year. And do you know what the best thing is of it all. He can run, run faster then I can!!! (the problem is for him to stop running, but that is besides the point.)

Fyrespirit I aggree with you, those parents do not deserve to have a child as special as her!!!

God would never give you a mountain you can not climb!

Sorry, had to get my feelings out, this is a very touchy type of subject to me as my brother is the centre of my universe.


"My mind not only wanders, sometimes it leaves completely."

"Insanity is my only means of relaxation."

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Groovy_Dream
SILVER Member since May 2005

Groovy_Dream

addict
Location: , Australia

Total posts: 449
Posted:In any other culture other than modern society, the disabled child would probably have been left to die. The fact that she is even alive, and have parents that want to care for her, is a miracle. So something that makes the parents' job easier has my full support.

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ado-p
GOLD Member since May 2004

ado-p

Pirate Ninja
Location: Galway/Ireland

Total posts: 3882
Posted: Written by: fyrespirit



There is NOTHING that will ever be happy about this situation until this child moves on from this lifetime and her spirit is able to enter the next....the parents don't deserve her.





I find your attitude a bit arbirtrary and shocking. You talk about predestination yet you think that her parents have the ability change it.



To hear you say that that nothing will be happy there until she dies is beyond words for me.



To say that her parents dont deserve her, without knowing anything except what you read in one post on the internet... well...



Im not going to debate this. I already know how i feel. Im apalled and saddened by your remarks though.


Love is the law.

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jeff(fake)


jeff(fake)

Scientist of Fortune
Location: Edinburgh

Total posts: 1189
Posted:ditto

I'm very glad this child has parents who were willing to make difficult choices. The world is all too full of people who put their children at risk because they are unwilling to make such decissions. frown


According to Heisenberg's Uncertainty Principle of Quantum Dynamics, we may already be making love right now...

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Doc Lightning
GOLD Member since May 2001

Doc Lightning

HOP Mad Doctor
Location: San Francisco, CA, USA

Total posts: 13920
Posted: Written by: fyrespirit


I am appalled!!! Did the parents ever stop to think that maybe there was a reason why they were given this child by the natural order?



Natural order?

Admittedly I don't know this particular girl's story, but she got to be there under most UN-natural circumstances. She was most likely a very premature infant who would have died without extensive and heroic medical care. The typical story is that while in the Neonatal Intensive Care Unit (NICU) the babies are intubated and ventilated, but their immature lungs are no replacement for a placenta and their brains starve for oxygen. They wind up permanently disabled. Not always; we have some very good outcomes (one of my 13-year-old patients is an honor student and an ex-26 week preemie, although he has some pretty bad asthma), but we also get a lot of very bad outcomes.

So once you start messing with nature (which would probably have taken this child within hours of her birth), you have to keep messing with it or the child dies.

The same issue comes up with kids with severe autism and mental retardation. They're often shrimpy/wimpy kids because of growth hormone deficiencies. They're 17 and look 12. Our neurologist's view is that "This is God's way of keeping them manageable. If you have a shrimpy wimpy little kid who's unpredictably violent and throws fits at no apparent provocation, why on earth are you going to give him growth hormone and turn him into a big huge muscle-bound man who is unpredictably violent and throws fits at no provocation? You'd be crazy!"

And he's right. It's not safe for the kid or for the people around her.


-Mike )'(
Certified Mad Doctor and HoP High Priest of Nutella

"A buckuht 'n a hooze!" -Valura

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GitasGuy


GitasGuy

Pooh-Bah
Location: Brisbane

Total posts: 2303
Posted: Written by: jeff(fake)



Based on what I know of the case, I fully support the parents in this one. Her "natural" developement would have resulted in her care becoming increasingly difficult. Ultimately her parents would be unable to care for her which would be distressing for all concerned. By putting a stop to her growth this gets prevented. Thus the child will be happier, and the parents will be happier. Why object to that?



Because its screwing with nature!! Disabilities are a horrible thing for any family to deal with. But that doesn't give the parents the right to mutilate a child to make their job slightly easier!!



 Written by: Flamz

I have a disabled brother. He only stardet to walk after his 8th birthday. When he was three the doctors told my mother that her child would never be able to stand on his own let alone walk. He is turning 21 early next year. And do you know what the best thing is of it all. He can run, run faster then I can!!! (the problem is for him to stop running, but that is besides the point.)





Thank you for showing us the true spirit of the human spirit.



How often are doctors wrong, very wrong!!! I have personal experience with this too. I could/should be dead thanks to a doctor thinking he knew what was right. HE WAS VERY WRONG!! and i was lucky.


:admires giant wooden aeroplane: Its about time trees were good for something, instead of just standing their like jerks!!! ubblol ubbtickled

Homer rocks!!!! ubblol ubbrollsmile

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Stout
SILVER Member since May 2004

Stout

Pooh-Bah
Location: Canada

Total posts: 1872
Posted:Doc's got a good point there. Did her parents indeed screw around with "the natural order" by using modern medical technology in order to ensure the infant's survival ?

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GitasGuy


GitasGuy

Pooh-Bah
Location: Brisbane

Total posts: 2303
Posted: Written by: stout



Doc's got a good point there. Did her parents indeed screw around with "the natural order" by using modern medical technology in order to ensure the infant's survival ?





Yes i believe they did, i do understand its not an easy decision they made but they made it.



 Written by: Doc

The same issue comes up with kids with severe autism and mental retardation. They're often shrimpy/wimpy kids because of growth hormone deficiencies. They're 17 and look 12. Our neurologist's view is that "This is God's way of keeping them manageable. If you have a shrimpy wimpy little kid who's unpredictably violent and throws fits at no apparent provocation, why on earth are you going to give him growth hormone and turn him into a big huge muscle-bound man who is unpredictably violent and throws fits at no provocation? You'd be crazy!"





This isn't the same at all. They are not giving these kids growth hormones. They are leaving them as god intended them to be.

The parents in the other case are tampering with this girl to make her easier to deal with.





:admires giant wooden aeroplane: Its about time trees were good for something, instead of just standing their like jerks!!! ubblol ubbtickled

Homer rocks!!!! ubblol ubbrollsmile

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jeff(fake)


jeff(fake)

Scientist of Fortune
Location: Edinburgh

Total posts: 1189
Posted:The child would have become deeply unhappy had her natural developement been allowed to continued. The only "mutilation" would have been that visited upon her by nature.



I don't think anyone taking part in an electronic debate has any right to preach to me on the "natural order". Why not try that with our diabetic members? I also take issue that you seriously believe you know what god's intentions are! Frankly I suspect he would be on the parent side as well.


According to Heisenberg's Uncertainty Principle of Quantum Dynamics, we may already be making love right now...

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ado-p
GOLD Member since May 2004

ado-p

Pirate Ninja
Location: Galway/Ireland

Total posts: 3882
Posted: Written by: GitasGuy


 Written by: stout


Doc's got a good point there. Did her parents indeed screw around with "the natural order" by using modern medical technology in order to ensure the infant's survival ?



Yes i believe they did, i do understand its not an easy decision they made but they made it.




I find it difficult to believe that we can tamper with the 'natural order'. It implies that we are somehow outside nature. Or above it. I dont believe we are. I believe we are subject to the same laws of nature as the rest of the universe.


Love is the law.

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mcp
PLATINUM Member since May 2003

mcp

Flying Water Muppet
Location: Edin-borrow., United Kingdom

Total posts: 5276
Posted: Written by: ado-p


 Written by: GitasGuy


 Written by: stout


Doc's got a good point there. Did her parents indeed screw around with "the natural order" by using modern medical technology in order to ensure the infant's survival ?



Yes i believe they did, i do understand its not an easy decision they made but they made it.




I find it difficult to believe that we can tamper with the 'natural order'. It implies that we are somehow outside nature. Or above it. I dont believe we are. I believe we are subject to the same laws of nature as the rest of the universe.



Thank god for reason ado-p.

It's in our nature to make buildings and clothes and medicine. So does that make it unnatural or against the natural order? Nature has proved time and time again that the natural order is both vicious and cruel. (sometimes also unusual.) I'd rather we left nature out of this and decided to do what's right based on moral reasons.

I think lightnings analogy is very good. In his the doctor retarded the kids development by the omission of medicine. Where's in the initial case the kid is going to be retarded by the use of medicine. In both cases it's been a deliberate choice to allow the kid a happier life.

The human body is just a hunk of meat, like any animal. Why should the addition of the 'human' tag lead to the absence of sensible medical treatment and years of unnecessary suffering?


"the now legendary" - Kaskade
"the still legendary" - Kaskade

I spunked in my friend's aquarium and the fish ate it. I love all fish. Especially the pink ones. They are my bitches. - Anon.

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Doc Lightning
GOLD Member since May 2001

Doc Lightning

HOP Mad Doctor
Location: San Francisco, CA, USA

Total posts: 13920
Posted: Written by: GitasGuy



Because its screwing with nature!! Disabilities are a horrible thing for any family to deal with. But that doesn't give the parents the right to mutilate a child to make their job slightly easier!!




First of all, I wouldn't judge them until you've walked a mile in their shoes. Ever taken care of one of these kids?

I have. Believe me, she'd be *IMPOSSIBLE* to care for at an adult size without having full-time nursing staff around. It would also put her at increased risk of bed sores and other horrible diseases that happen when a person gets to adult size while having neonatal abilities.

You have to match size to capabilities. Otherwise it gets very ugly for the patient. It's not about making the parents' job "a little easier," it's about saving the girl's life and holding the family together.


-Mike )'(
Certified Mad Doctor and HoP High Priest of Nutella

"A buckuht 'n a hooze!" -Valura

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Doc Lightning
GOLD Member since May 2001

Doc Lightning

HOP Mad Doctor
Location: San Francisco, CA, USA

Total posts: 13920
Posted: Written by: GitasGuy


This isn't the same at all. They are not giving these kids growth hormones. They are leaving them as god intended them to be.
The parents in the other case are tampering with this girl to make her easier to deal with.





Wait a minute. You know the mind of God now?

God also intended for diabetics to die. For that matter, he intended for people with (now) minor skin infections to die of sepsis.

We treat those people and thus tamper with the natural order. So why not treat this girl? I bet she also has a feeding tube. Is that tampering with the natural order?


-Mike )'(
Certified Mad Doctor and HoP High Priest of Nutella

"A buckuht 'n a hooze!" -Valura

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Birgit
BRONZE Member since Jan 2005

Birgit

had her carpal tunnel surgery already thanks v much
Location: Edinburgh, Scotland (UK)

Total posts: 4145
Posted:I think the article doesn't give as much information as most of us would need to actually make a choice, based on what the child can or cannot do, what the parents can or cannot cope with, and if it would be better to have the girl grow but away from parents who couldn't restrain her if necessary, or pick her up when whe falls out of bed, etc.

It seems dangerous to discuss this based on what's happened with other people with possibly completely different disabilities and families in different situations than this one.

I can't start to imagine what it must be like caring for a disabled child, and Flamez has given a good example of how it can work for a family. But I don't think I'm in any position to judge what the family in that article could (not) or should (not) have done.


"vices are like genitals - most are ugly to behold, and yet we find that our own are dear to us."
(G.W. Dahlquist)

Owner of Dragosani's left half

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Stout
SILVER Member since May 2004

Stout

Pooh-Bah
Location: Canada

Total posts: 1872
Posted: Written by: mcp


I'd rather we left nature out of this and decided to do what's right based on moral reasons.




That's exactly what we're doing here, making moral judgements based on some sort of subjective moral code that labels the parent's behaviour as somehow unnatural.

Over on another thread, I was judged not worthy of developing telekenitic powers ( by the natural forces ) due to "immoral" reasons for wanting do do so,,,,I wanted to break Vegas biggrin

But to keep the conversation in this vein, who's to say that what happened with this girl ISN'T what the "natural forces" had in mind ?
Maybe this whole process happened, just to spawn the existance of this thread. ( no winking smiley )


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mcp
PLATINUM Member since May 2003

mcp

Flying Water Muppet
Location: Edin-borrow., United Kingdom

Total posts: 5276
Posted:sorry, should have put moral reasoning. IE: a reason backed up with a stronger argument than: "It's unnatural!" Which isn't one.

"the now legendary" - Kaskade
"the still legendary" - Kaskade

I spunked in my friend's aquarium and the fish ate it. I love all fish. Especially the pink ones. They are my bitches. - Anon.

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Stout
SILVER Member since May 2004

Stout

Pooh-Bah
Location: Canada

Total posts: 1872
Posted:"It's unnatural" is a moral arguement,,I don't buy into it, and I'll attack it ,however to the "believers" it's completely valid.

Life is so much more fun with so many different moral viewpoints


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mcp
PLATINUM Member since May 2003

mcp

Flying Water Muppet
Location: Edin-borrow., United Kingdom

Total posts: 5276
Posted:I don't think so. I think nature is amoral so using "it's unnatural" as an argument is literally insane.

It's like saying it's outwith the realm of physics. Which it's not.


"the now legendary" - Kaskade
"the still legendary" - Kaskade

I spunked in my friend's aquarium and the fish ate it. I love all fish. Especially the pink ones. They are my bitches. - Anon.

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Stout
SILVER Member since May 2004

Stout

Pooh-Bah
Location: Canada

Total posts: 1872
Posted:Nature, and all it's machinations is immoral, true, and I'd love someone to prove me wrong on this. But I'm hesitant to class a human morality based on perceptions of a "natural morality" as insane because ( unlike the laws of physics ) it's a very subjective topic. It sure is tempting though.

It's like the religion as a mental illness thread, I don't buy that one either, but I wonder if there is a connection between religion/spirituality and psychological addiction ,like to gambling, or porn ( I could be way off base with that one )

It all comes down to trying to make some sense of the world and how it works.

Me? I just accept it for what it is, which is why I ran screaming out of philosophy class.


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jeff(fake)


jeff(fake)

Scientist of Fortune
Location: Edinburgh

Total posts: 1189
Posted:Not immoral, it's amoral. (sorry for pendantry)

Nature just doesn't care, it simply is.


According to Heisenberg's Uncertainty Principle of Quantum Dynamics, we may already be making love right now...

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