Asian Child with Harlequin Ichthyosis

Asian Child with Harlequin Ichthyosis

Video from an unspecified country in Asia depicts a child with Harlequin Ichthyosis – a genetic disease that turns skin of the affected person flaky and hard. The abnormalities in the skin also disrupt normal fluid retention within the body, and fail to act as a barrier that blocks bacteria and infection from readily entering the blood stream.

Note how inflexible the child is. Like it’s in a full body cast. I don’t know to what extent the brain is affected, but if the brain is fully functional and aware, the experience of being locked up within oneself must be awful.

Props to Best Gore member @african-angel for the video:

Author: Acneska

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115 thoughts on “Asian Child with Harlequin Ichthyosis”

    1. This is the second one I’ve seen past baby stage. There is a young lady out there with a milder form. She still has the scaly skin, lack of nose and is blind but doesn’t have the red eyes. Last I read, she was in college. Amazing to survive that long. This is one of the few deformities that freak me the fuck out. Poor child.

      1. I have a friend who have this condition too. He’s way past the baby stage.
        Indeed, it’s amazing some survive longer than normal but yeah, I think some might be lucky to the point that the disease don’t make it that life threatening

      1. Hah …. oh nooooo…not the jizz!!! Nah i was kinda referring to people who feel bad about their life….I wasn’t complaining about mine….. although it can have sucky qualities at times…

    1. This does makes me sad. But I want to say thank you to that mother. I see those sunglasses in her hand for her child. It really sounds and looks like she’s doing everything she can/knows how to do. I think maybe this is a time to focus on the strentgh of this mother. Someone loves this child still, it’s not in a plastic bag or river bed. Hang in there you two, I hope it gets better someday for you both.

      1. I was thinking the same thing as soon as I saw the sun glasses. I can’t even imagine the pain this child goes through and what his/her parents go through knowing that every touch is hurting their child. From what I’ve heard about this birth defect, it is extremely painful. Makes you wonder if if wasn’t best to humanely put him to sleep when he was born. Instead of living like this. In pain. Suffering everyday and everything he moves. Mother hen does seem very strong and looks like he is at least getting the love he/she needs, I hope. Poor little thing.

    1. True. What his parents probably call “love” is the purest form of egoism to me. When you see your own pain of loss as more important than the well being of your kid (fully conscious he is just suffering every day and will never lead a happy life). Just think of if the tables were turned….I would expect of my parents to put me out of that misery if they TRULY love me.

      1. well said ….whats the point of keeping him alive in a state of vegetable ? he will never be able to walk , go to school , get a job ,have a family ,contribute to society , none of these this would be possible to him ….if that was my child i would put him down ..death is far kinder and merciful to him than a life in that condition

        1. @angelofdeath92, you are not allowed to keep an animal alive if it has terrible genetic conditions.

          @ruzzky, these days kids with the most terrible diseases, sickness’s etc. go to school! At my kids primary school, there is a section for ‘special’ children called Ed. Support. Parents demand that their kids go to normal schools, kids with severe autism, downs syndrome, cerebral palsy etc. Some of these kids have 2 teachers each, because of behavioural problems and some kids have very special needs. I don’t really have a problem with them and I would probably want my kid at school if one of them was ‘special’, although the cost of these schools is phenomenal. Imagine your child having his/her own teacher though, that is lucky I guess? Also I think it must be exhausting looking after a ‘special needs’ child, it gives the parents a break when they are at school for 6 1/2 hours for the day and these kids do love it at school, I see them all the time.

          1. Hi tas-tiger . I guess we are fortunate here in the U.S. to have laws that handicapped kids get almost anything that will help them in public school. My son is mentally handicapped and we were able to place him in with the regular kids and had a special education helper to help him with things. The great thing was that the other kids in his classes began to care for him and help him out with all kinds of things. It was a win win situation for all. Gave him his social skills and gave the regular kids an opportunity and education in helping those less fortunate than them. Those kids who went through school with him really took it upon themselves to look after him and make him a part of things.

          2. @milton61, same with Australian schools, not all have a Ed. (Ed. being short for education) Support – a school within a school, like my kids school but there are lots of schools that are equipped for taking on the ‘special’ kids. Actually my kids high school is the school for the special kids too. Some of these kids I have known for 15 years and some of them still yell out “hello” to me if they see me down town or at the school etc. They know my kids names so they call out “hello James mum” or “hi Sam’s mum” lol My middle son has a real empathy for some of them and I remember him squatting down next to other kids in wheel-chairs just having a chat with them, some of them couldn’t even talk but he still would talk to them, he would push them at lunch-times around the school oval, the parents of special kids really appreciate that sort of thing. This generation of young people are used to seeing, well everything, nothing is taboo anymore, nothing much ‘shocks’ young people. I think young people are very accepting of differences in others more than ever. I never hear my own kids say a bad word about any race, sex, disabled etc. never.

        2. It’s hard to say….if I was a parent it would be hard , maybe I would prefer to have my son to die instead of living and suffering for ever, but if a doctor told me that there might be new cures in the next future to help someone with such disability and there would be hope that he will have an almost normal and productive life, then I would want him to survive.

      2. The human mind deals with the worst kind of life in a very interesting way. It’s called coping and it is entirely possible to find happiness regardless of the life that’s given. It’s really fucked up to say that child would prefer a bullet.

  1. Damn i think thats the first thing on BG thats seriously made me step back and just go “woah…,” knowing that poor kid is alive…. makes you feel human. I mean all political, racist, crazy shit aside that kid has to wake up every morning like that regardless….

    Also some comment about beeing stoned watching friday and something innapropriate about the ultimate halloween costume… or human jerky… maybe a crack baby joke?? Benjamin buttons long forgotten went horribly wrong twin??

  2. I cringe when I think of what kind of life that poor kid. Usually they die before a year old. That’s fucked up. His mom must be doing a really good job of caring for him, he wouldn’t have lived this long. She would make a fine nurse.

  3. These children rarely live more than a few months; a year at most. To see that this one has done so well is a testament to the love and care show by their mother. I cannot imagine the torment that child lives with daily, but at least they are loved.

  4. In a case like this, it is not at the discretion of other humans to decide whether another being at that age should live or die. When he grows up, it will be his choice, because that is his basic human right. Bless this child.

  5. This is terribly sad. But life is what you make of it. I watched a programme about 2 sisters who have this disease and one is quite successful, lives on her own and has a job etc. They have to have long baths of a morning to help soften the skin and then put shit loads of cream on to stop it from cracking during the day. Must be painful as fuck. But it goes to show how strong a person can be. She must get bullied daily by the ignorant fucks out there but she refuses to let them get to her

        1. Oh no…lol
          I couldn’t help but laugh, but at the same time there’s a real debate, here: can we end up one’s life? My English is bad, I’m talking about euthanasia. Well, it depends on the family’s will. And most of all, on the sufferings of this poor child. The child must be heard. If it was only my opinion, I would prefer death, over a life, imprisoned in this body. It must be Hell. But then, there’s love. Of course the parents love their child (they always do…), but they cannot be selfish to the point that they keep alive a child who suffers like that. Just because they fear that they will be sad? Just because a child isn’t supposed to die before his parents? Well, it’s selfish…
          The mother does look like she gives all her life to her child, cause otherwise, the child would surely be dead already. But just imagine, living one day, imprisoned inside your own body, and being like a vegetable. Would you want a long, long life? I don’t think so. Life is a right, and it must be respected, and given to everyone. But this child, with this awful condition, doesn’t deserve it…And I’m really sorry…If it was me, I would ask for death…

  6. Hunter Steinz I believe has a lesser case of this. I didn’t know this disease has different levels of affliction. I thought it was all in or all out. However, maybe after the baby survives after looking like some kind of monster, they grow skin and their eyes get normal again? I saw a video of Hunter and she looks like a burn victim but not horribly so. I wonder if this child will begin to look more normal if it survives beyond this horror state? Any doctors on here that have an explanation as to why Hunter seems like she keeps getting more normal with age and the babies look like they would not survive more than a few days. (Like this child)

  7. http://mycoolnews.com/What-is-harlequin-ichthyosis-Harlequin-Baby

    This shows you some pretty severe cases similar to this baby’s. I can’t imagine the pain. Look how the skin is thick and breaks open causing wide cuts and sores. The pain must be incredible. Makes you take a step back and be thankful, even if it’s for a few minutes. Having a child and knowing you can’t touch them because it would cause them such pain and anguish is incomprehensible. Plus the fact that you are powerless to take it away of comfort them. Most this severe pass away quickly and are incredibly susceptible to infection and severe dehydration, because of all the fluid loss, not to mention then can’t regulate their temperatures. Making it rare to live beyond a few weeks. Milder cases are living into adulthood because of new treatments. My heart goes out to this baby and the family. Life just sucks sometimes.

    1. The video and images, the discussions about euthanasia, none of that phased me. Imagining what it would be like to breast feed a baby whose lips are made of, basically, fingernails… that weirded me out.

  8. Imagine if these poor babies made it to the walking stage, my daughter is beautiful but when she could walk, some mornings id wake up to her right in my face and it would scare the shit outta me. I would die of a heart attack if this kid creepily stated at me til I woke. *chills

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