wow...one of the most..just..wow disorders i've ever seen...(Treacher Collins)

[mista_mo]

http://www.julianawetmore.net/pictures.php


I know i am linking to a single person but apparently 1 in 10,000 children suffer from this. It's a genetic disorder that...well, is characterized by malformation of the facial bones and such...

I dunno how i would react as a parent to this...I mean they would be my child, but at the same time, what kind of like would they live?

poor child.

*edit*
http://en.wikipedia.org/wiki/Juliana_Wetmore

wikipedia article on the disorder.

[capncnut]

How terrible... :(

[MissJacksonCA]

A cleft palete is very common but this young lasses case is obviously an extreme case and quite sad. I have to think of the quality of life of the child because of the cruelty of people and other children everytime I see someone with a abnormality. Something I find truly obscene is whenever people see a 'little person' they whip out their camera phones and take pictures. I feel like publicly mauling them when I see that.

Personally I would imagine an amino would reveal if this abnormality was present in my unborn child and would likely not carry it out to term. Its cruel if its a case thats uncommonly visible because it would require numerous and painful surgeries throughout the youngsters life that would be so intolerably painful i'd hate to put a child through that relentlessly over the years. Not to mention the financial burden would likely tear the family apart and the constant post-surgical care would be constant. I just couldn't do it.

[mista_mo]

i agree...more for the childs sake then my own, as my years at elementry and high school have taught me, even the "normal" children are hot targets for bullying, let alone one like that.

[darth los]

There are organizations out there that are devoted specifically to performing plastic surgury on kids like that so that they can have a normal life. Good cause.

[MissJacksonCA]

Believe me I have the uttermost respect for plastic surgeons who specialize in reconstructive surgery to help restore some semblance of normality to a persons appearance because they literally devote nearly 15 years of medical study to perfecting their art only to be able to practice for a very short amount of time before their age affects their every movement and thus prevents the absolute and accurate precision that reconstructive surgery demands. Those are the doctors that are truly in it to help people. However they are not Gods and cannot restore complete normalcy to a persons appearance in every situation with any disease. And there are always going to be more and more complications with age that are going to result in a life of constant post-op living which isn't much of a life at all. Additionally the doctors who tend to group together to form the teams that do the surgeries come from around the world and so the patient would be dependant on the doctors survival and on being able to constantly reuinite them in order to continue to look 'normal.' Its seldom a simple one surgery miracle and thats the tragedy of it all. If one surgery could make even an average joe look normal we'd all be gorgeous.