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Wookiee
A most terrible and extreme case of Treacher-Collins afflicted this young girl, Juliana Wetmore; born without a face, this li'l cleft princess is now three years old.

Now, personally, I think it's a horrible thing to let an infant born with such awful deformities to live, putting it through so many procedures and operations for the sake of what? America's so-called Culture Of Life? "Miracles"? Gah. Don't get me started. And the parents starting this website to parade their adorable little abomination to the world. Christ.

But as the parents are putting the little monster through these torturous processes, and as she's on the internets for all to enjoy, I can only presume that one day she will be out in the world, doing whatever it is scary melty-faced people do. What kind of career will little Juliana have? Will she ever find love? Will science ever cure her, or will she yet be carried off to Heaven? Maybe she's too ugly for even Jesus to love, I don't know.

Anyway. Here's Juliana auditioning to bein Guns 'n' Roses! Enjoy!

Mata
While I don't agree with your extreme reaction, I do wonder what kind of life is ahead for the girl. How much can surgery really do for her?

Inside that head, as far as I can tell, there is a perfectly normal brain harbouring a mind like ours, looking to find enjoyment and love in her life. How possible will this be for her when her whole childhood will have been marked by the reactions of strangers to her facial deformity? Can someone grow up to be psychologically stable when faced with such challenges?

As much as I'd like to believe in the indomitable human spirit, I can't help but wonder if such extreme deformity might be too much for a person to bear. I assume that the lack of facial bones means that she is also, currently, incapable of speaking. I guess this would leave her in a position where sign-language is her only means of communication, ironically forcing people to look at her when their looks may be the very thing she wants to get away from.

I don't know. When it's not a life-threatening condition then doctors have to help the patient live, but it's hard not to imagine a lot of depression and therapy in the future for this girl. Maybe the love of her family will be enough, and she will become an immensely strong person, campaigning for the rights of those who have a disadvantage in life.

Humans are strange things; put two people in the same tough situation and you'll see two different responses. Perhaps she'll be the kind that takes life by the collar, knees it in the nuts, and walks away victorious. I hope so. Extraordinary difficulties can produce extraordinary people, but they can also break many more. I guess time will tell.
Witless
QUOTE (Wookiee @ Aug 23 2006, 02:11 PM) *
A most terrible and extreme case of Treacher-Collins afflicted this young girl, Juliana Wetmore; born without a face, this li'l cleft princess is now three years old.

Now, personally, I think it's a horrible thing to let an infant born with such awful deformities to live, putting it through so many procedures and operations for the sake of what? America's so-called Culture Of Life? "Miracles"? Gah. Don't get me started. And the parents starting this website to parade their adorable little abomination to the world. Christ.

But as the parents are putting the little monster through these torturous processes, and as she's on the internets for all to enjoy, I can only presume that one day she will be out in the world, doing whatever it is scary melty-faced people do. What kind of career will little Juliana have? Will she ever find love? Will science ever cure her, or will she yet be carried off to Heaven? Maybe she's too ugly for even Jesus to love, I don't know.


Bit extreme.. I used to know someone with pretty severe treacher collins, and to be honest he didn't seem to exhibit half as many psycological issues as your average 'emo' kid.

People stared at him all the time, made fun.. etc etc, and he just said 'I'm used to it'. He dealt with it, because he's had to learn to. But was otherwise pretty ok about life. I don't see him much anymore, because he stopped hanging out where I hung out. But he's stuck in my mind. He generally seemed more optimistic than I do (which put me to shame I can tell you).

This tells me one thing. There's no overwhelming way to tell whether someone like Jullianna will cope or not. But you can't say someone should just be ok to die because they may not cope with their life. If that's a prequisite for letting someone die then then the I say we put every whiny emo teenager to death too.
Wookiee
QUOTE (Witless @ Aug 23 2006, 03:55 PM) *
But you can't say someone should just be ok to die because they may not cope with their life. If that's a prequisite for letting someone die then then the I say we put every whiny emo teenager to death too.


Can we?
oxym0ronical
I think the biggest issue is something both Mata and Witless touched on: quality of life. The problem is, we can't define what someone else's quality of life is. The parents decided to bring their child into the world and let her live her life as well as possible. I can't fault them for that, because sometimes morally and emotionally, it's impossible to let go of someone without a fight. Obviously they love her and will be a good support system for the emotional and physical trauma she may go through later in her life.

I found this interesting, because you wondered what could become of little Juliana:
"In most every way, I am your typical, garden-variety human being. I am a third year Med-Peds (i.e. Internal Medicine and Pediatrics) resident at Baylor College of Medicine in Houston, Texas as of July 2006. I graduated medical school from the University of Texas Health Sciences Center in Houston. However, many people assume right from the start that I must not be "normal" since I don't look "normal." I have Treacher Collins syndrome." http://www.treachercollins.org/main.html

One of these "melty-faced" people may one day save your life.
{Gothic Angel}
Arguably, it's impossible to define anyone's quality of life, even if you are the person concerned, because you don't have anyone else's life to compare it to, although I agree if someone is suffering within themselves, that's a bad thing. But then again, if you go by the "no-one should suffer and anyone whose perceived quality of life is low because of circumstances beyond their control should die" thing, then why spend millions of (currency)s worth of money on psychiatric help for people who overdose, or have depression, or whatever?
pgrmdave
Whose choice should it be to end her life? I don't have much of a problem if she should choose to end her life, but is it really a parent's choice to decide whether or not their child's life is worthwile? I know that I could never be comfortable making that decision for another person, and once they are born, it is nearly impossible to justify the morality of that. Just imagine telling your child about your decision about her life:
"Well honey, we think that you're too ugly, people will always treat you unfairly, and so your life probably isn't worth even living, so just come here and take these pills, okay?"

If, when she grows up (at whatever age she is mature enough to understand) and decides that she would rather not be alive, then she should be allowed to take her own life. It is her parents responsibility to try to provide the best childhood that they can, whether or not she is disabled in any way.
Calantyr
What does the least harm, letting someone die (or killing them) at birth or allowing them to live with disabilities.

Personaly I'd let them make the choice. If they want to kill themselves when they are older then at least they've experienced enough to make that choice. I don't agree with taking away someones options at such a young age. True they may suffer until they are old enough to make such a choice but simply ending their life at birth because they are 'different' smacks of obscenity to me.

But then again I value life very highly considering I don't believe in an 'afterlife' or reincarnation or anything.

On the other hand... parents invest a lot in their children. They continue on the family line. In a weird way it's the purpose of the child to immortalise the parents. Do not the parents have a say in how they will be remembered?

But that's a dangerous road to go down.
I_am_the_best
If I was a parent, even if she was my child (although maybe my view will be different when I do actually become a parent) I'm not sure I would want to have a child who I knew was going to be bullied and be stared at wherever we went. I think it would just be difficult to come to terms with. I mean, the parents of Juliana seem to be coping very happily from what we can see but I'm not sure I would act the same. I mean, I'm not going to lie - I am prejudiced, I would probably be slightly scared of my child.

From the child's point of view, if I was born with Treacher-Collins Syndrome I would probably be very unhappy. I think that one's 'image' is important in the world, even if only on a trivial scale; it dominates a large portion of teenage culture. I think I would be deeply unhappy. People are already insecure enough as they are.
{Gothic Angel}
I agree with Emma, but I would also argue that it's almost certain to be different for her if and when she becomes a parent. I don't have kids, so I can't speak from experience, but all the mothers I know agree on one thing - once you've carried a child for nine months and given birth to it, there is this huge, overwhelming sense of attatchment and love to your child, regardless of what he or she looks like. It's a biological response, not even in control of the mother - she *has* to be attatched to the child or the human race wouldn't survive. If you look at the species of ape which live in social group - or even if you look back into the history of human beings - mothers have always defended their deformed children from societies which wanted to abandon or kill it for the sake of the community - it makes it that little more difficult for a community to survive every time they have to stop and wait for the lame kid who can't keep up, or whatever. I think I'd probably feel more gulity than scared, that I couldn't provide a better life for my child.

Also, that whole "image conscious" thing does seem to kinda disappear as people grow up. I wonder if she wouldn't come through her teenage years, ok, yes having suffered, and then get over it and accept herself like the majority of other teenagers eventually do? Just a thought.
Wookiee
QUOTE (Calantyr @ Aug 24 2006, 05:50 PM) *
What does the least harm, letting someone die (or killing them) at birth or allowing them to live with disabilities.

True they may suffer until they are old enough to make such a choice but simply ending their life at birth because they are 'different' smacks of obscenity to me.

But then again I value life very highly considering I don't believe in an 'afterlife' or reincarnation or anything.


Nor do I, and in that instance, without the idea of an eternal soul, would the infant ever really know? You ask what does the least harm, but I wonder which is more cruel? Is it the height of human vanity for a parent to put their child through so much trauma, through surgeries if nothing else, because "all life is sacred"? Pffft. Life simply is. Just because we can preserve a life doesn't mean we should, and just because we can attempt to reconstruct a face doesn't necessarily mean we should try that either; especially when the results are amateurish at best, Eduard Munch at worst.
Calantyr
QUOTE (Wookiee @ Aug 25 2006, 10:54 AM) *
Nor do I, and in that instance, without the idea of an eternal soul, would the infant ever really know? You ask what does the least harm, but I wonder which is more cruel? Is it the height of human vanity for a parent to put their child through so much trauma, through surgeries if nothing else, because "all life is sacred"? Pffft. Life simply is. Just because we can preserve a life doesn't mean we should, and just because we can attempt to reconstruct a face doesn't necessarily mean we should try that either; especially when the results are amateurish at best, Eduard Munch at worst.


Would it know? No. But it would be deprived of the chance 'to know', the opportunity to develop as a person that otherwise would not have existed. I think that there is a certain worthiness in that, but as you say what is most valid?

Why shouldn't the parent try to do everything in their power to give the best existance for the child, however they see fit? That is the point of parenthood. Vanity perhaps, but it is no different than parenthood has been for anyone else.

And of course look at the advances in cosmetic surgery that have happenned since the First World War. Back then even simply surgery (by todays standards) would result in a patient that looked like the elephant man. Today some of the same conditions can be completely 'cured' or at least come close. In another 20 -40 years who knows. Let us not forget that recently someone had the first COMPLETE face transplant.

Maybe its trusting too much to hope that we will develop even more superior cosmetic surgery techniques, but the trend has been that we advance with it perhaps faster than any other form of medicine. If the end result is a child indistinguishable from any other I think that alone justified letting such children live.

And stuff.
Mata
Not forgetting also that the difficulties faced by this child may lead to techniques that help future sufferers. It's still sucky to be the test-case, but that's also not a life without meaning.
Felander
QUOTE (Mata @ Aug 25 2006, 05:23 PM) *
Not forgetting also that the difficulties faced by this child may lead to techniques that help future sufferers. It's still sucky to be the test-case, but that's also not a life without meaning.

Aye. This little girl's case may well make the career of the doctors who perform the surgery on her. Should the techniques they use and the surgery prove successful, they will be able to further help others who are in need of some degree of facial reconstruction.
Star_of_Lei
Girls are, lets face it, bitches, everything is taken on looks. So for little Julianna, we have to say that her life is always going to be harsh.

If she was my child, I am ashamed to say, but I could not raise her, I know every parent is supposed to love their child, but I just do not have that type of personality, maybe that makes me cruel, I can't say. But what I can is that can you imagine what a boost, even if it is only a small one, to the fact her parents have opened a site to say how beautiful she is. Yes, in the long term, there's no doubt that she'll come home and cry, but at least she'll know that.

Past that, who are we to say one way or t'other? It's her life, and though she may hate her parents for letting her live like this or hate people, hate herself, ultimately, it is her choice to do so.
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