[hunny~bunny]

I recently found out about the harlequin disease. It happens before birth when the baby is a fetus.When born, skin plates are cracked, eyes seem red because the eyeballs flip inside out resulting from the tight skin. It's really rare (about 1 in 300,000). I thought this was so sad, and I wasn't sure what to think about these babies as to whether or not they should be given a chance to live a semi-normal life, or be put out of its misery because it's painful. I found two videos about it on youtube.

The videos:

http://www.youtube.com/watch?search=&m...p;v=oLmhGb4ZdZo
Ignore the title of this video because some stupid person titled it this.
http://www.youtube.com/watch?v=JvQLh1hibT8
This is a more happier story. A baby with harlequin disease lives up at least to the age of 19




http://www.ispub.com/ostia/index.php?xmlFi...1/harlequin.xml
this is a site with a detailed explanations about this disease and some pictures. The pictures might freak some people out, so please don't click if you're uncomfortable with this.







very sad

[~ BunnyliciouS ~]

o this again, yeah sad, it's been posted a couple of times

[hunny~bunny]

o shoot are u serious. should i close this thread then

[~ BunnyliciouS ~]

^ Nah, no need, not all people know about it

[YoochunsGirl]

aww this is so sad. Why must so many bad things be in this world? why must children who havent even breathed their first breath be sentenced to such sad lives? But there is always some happiness to it. Thats so sad yet sweet that ryan lived to be 19, he shows us that you can keep going.

[QUlRKofFATE]

awww i saw a show about this on discovery health channel or tlc over thanksgiving break. the kids have to keep themselves creamed all the time and they have to bathe for 30+ mins every morning to slough off all the of their skin or else it could kill them. they have to change their bedsheets everyday and make sure nothings contaminated because their skin is supposed to protect them from germs but it doesnt so theyre really susceptible to illness and infection

i think at the end of the show they said they found the protein thats missing in their cells and they were gonna try and put it in the cream so the harlequin sufferers can try to grow skin. but it was relaly sad cuz im sure ppl look at them funny all the time and they cant lead normal lives =\

[Classic Example]

That's so awful.... I saw the picture. I can't believe some people have to be born like that to have such a hard life..

[cbxjenn]

ive never seen anything like this. :\ but it's pretty awesome how ryan survived this long. a real fighter.

thanks for sharing.

[my_love_shy]

that is so sad, people just don't understand things.

[chineseduckling]

yeah, heard about it. gah the babies scare me. yet soo sad ;[

[Malice_Kaiser]

I heard about this a few years back. Did a report on them actually. Scare the crap out of me.

If that thing came out of me I don't know what I'd do. Go into a coma or explode or something.

[hippiehop]

oh i saw a thing on tv about this before but i never knew what it was...

wow....

[Azngel]

there was a documentary on this on Discovery Health just tonight

[Snaily]

It really is very sad O_O I remember watching it on the Discovery Channel, and they were talking about how he could never eat enough because his skin was just constantly growing and shedding, so he had to hook himself up to a feeding tube while he slept in order to get enough nutrition.

[missxsuong]

that's really sad
living to 19 is not enough time

[obs3ssive]

wow how strange! I literally JUST watched a show on discovery health dedicated to this. it's amazing how much time, care and love these parents have for these children. It is literally a 24/7 commitment, and it's just...amazing o.O

[blue_shoe]

Seriously, if life is a gift, then we all should have the right to accept or decline.

[BloodPrincessShiroto]

Wow... that is really sad. I never even really heard anything about the disease but thank you for informing me about it.

[kelvin6]

I work at UCSF (San Francisco, CA) at their campus store, which is a medical school and hospital campus and in my store, i see many customers, sometimes children (its also a children's hospital) who are at the hospital everything from a simple broken arm to leukemia. I've heard many stories from customers about their experiences and how they conquer their illness... and sometimes not so good ones too. At first it was quite depressing, but now it doesn't sadden me anymore... but it does inspire me to do something with my life.

Right now i'm studying radiography at my community college. Essentially i'll be x-raying ppl and more. Its not just that feeling to want to help people, its also about personal satisfaction gain. It would make me very satisfied to know that images that i'm taking will be used to diagnose and save lives.

[beautystar]

why must there be so many sad things in this world?????