Deleted
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Post by Deleted on Aug 25, 2015 7:11:09 GMT
www.gofundme.com/akzmq2az is the link to the story as it is not too far from where I live. This baby has Down Syndrome and cancer. She is being subjected to two lumbar punctures a week and 8-10 months of "intensive" chemotherapy. Would she be treated elsewhere in the world with the attitude "save at all costs" if she is potentially that sick? Would there be someone to draw the line and say Lily is too fragile, sick and won't survive treatment? I would love to write an ethical paper on this supporting my opinion of her treatment as someone working in health care payments. I also can see it from the other side. (Perhaps a moral and religious perspective). I have no experience writing an ethical paper nor do I know my head from my foot when it comes to supporting my opinion with research and documentation. I can imagine doing the research, but ultimately there is no one who would need to read it. I had better edit this part, too in blue bold: I am not sure why two Peas are getting bent out of shape because I want to research something that interests me. It would be a work of fiction as I would not use anyone's real names or anything.
Not only that, I would not publish it. Heck I wouldn't even hit print on my printer.
I could also say I want to write a paper on why I hate wearing sunscreen and spend as little time in the sun as possible. Again, a completely pointless paper other than for my own enjoyment.
I am not thinking I am publishing anything of any importance here. It's fiction.
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gsquaredmom
Pearl Clutcher
Posts: 4,078
Jun 26, 2014 17:43:22 GMT
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Post by gsquaredmom on Aug 25, 2015 7:37:52 GMT
I would think her parents are making the decisions for her, and your ethics paper would not matter much to them.
I thought you worked in sales at a women's store?
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Post by gar on Aug 25, 2015 8:09:26 GMT
www.gofundme.com/akzmq2az is the link to the story as it is not too far from where I live. This baby has Down Syndrome and cancer. She is being subjected to two lumbar punctures a week and 8-10 months of "intensive" chemotherapy. Would she be treated elsewhere in the world with the attitude "save at all costs" if she is potentially that sick? Would there be someone to draw the line and say Lily is too fragile, sick and won't survive treatment? I would love to write an ethical paper on this supporting my opinion of her treatment as someone working in health care payments. I also can see it from the other side. (Perhaps a moral and religious perspective). I have no experience writing an ethical paper nor do I know my head from my foot when it comes to supporting my opinion with research and documentation. I can imagine doing the research, but ultimately there is no one who would need to read it. With that said, what made you think you'd like to write an ethical paper? I agree, her parents and her doctors would be working to achieve her best interests with her parents having final say.
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Post by pjaye on Aug 25, 2015 8:21:27 GMT
People who work in "healthcare payments" don't write ethical research papers. There are actual ethicists who have the education & experience in the field they are writing about to support their ideas and opinions. Those people write papers and other people in the same profession read them.
You'd just be writing an opinion piece, really for your own benefit as no-one else would be interested in it. And I'm not being bitchy just for the hell of it, it's a fact unless you work in an area, you have no idea about the ethics involved and people who do work in those areas would laugh their asses off. That would be like me (an Australian nurse) writing an opinion piece about American football when I've never lived there and never seen a game, I can have an opinion, and I can write a paper - but no-one would give a shit about it.
If your real question is "what does everyone think about treating an intellectually disabled child who has cancer and subjecting her to 10 months of invasive/aggressive treatments" That's something that posters here might want to discuss further.
If you're asking if other countries would treat a child who has Down Syndrome and now cancer with aggressive treatments, then as a nurse, my experience would be that in first world countries - yes, they would. In poorer countries with more limited resources and different attitudes to disabled children, they might not. But I believe if the parent want treatment (and potentially even if they didn't) and if it was likely the outcome would result in saving the child's life, then yes they would treat her. We don't live in countries where doctors decide some lives are disposable and simply don't treat children who have pre-existing conditions. And NO, no-one 'draws the line" before treatments starts or in the early stages. While a lumber puncture sounds horrible to a lay person they really aren't any worse than any other procedure (blood test etc) for a child. I've held lots of children while they have them done. Plus this is a relatively short term treatment, 8-10 months and the result could be she gets another few decades of life. Worth a shot I'd say, and no doubt just about every parent would agree.
There may be a point further down the line where they have tried one or more different things and the child hasn't responded, if it's becoming clear that the treatments aren't working and the condition is getting worse and the treatment is now doing more harm then good, then there will be a family conference where the parents and the doctors, and rest of the care team get together to decide how to proceed. At that stage they may make a group decision to discontinue treatment and let nature take it's course. But there are no dictator doctors that come in and go: "no treatment for you!" Your view is far too simplistic and it is very clear you have no concept of what's involved on either a medical level or an ethical level. In countries like ours, we don't just decide to let kids die because it's too expensive or they have another disability or we think a few invasive treatments are 'too much'.
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Deleted
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May 2, 2024 7:21:27 GMT
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Post by Deleted on Aug 25, 2015 8:42:16 GMT
I used to have to write arbitrary things for the organization I worked for. I was in communications at one time. To write an ethics paper would be for myself. I wouldn't let anyone else see it as who cares what I think? The perspective I would take is from the insurance company paying the bills. This has nothing to do with me or where I work or for anything other than personal interest. One of my co-workers has a PhD. She isn't working in her field because she doesn't want to. Most of us have at least one if not two or three degrees. We do what we do for fun (there are a couple of us in it for the money, but there is no money to be made in retail in my field. Believe me!) pjaye I would not be writing it for anyone to read except me. It would be an opinion piece rather than an ethics piece, for sure. I am not submitting it to be critiqued. I would just research and write for the sake of researching and writing something. (I don't have to write another paper on why the role of women in Japan has changed since the end of WWII as seen through literature of the 20th century... Yeah, that was interesting to read and write to my advisor and me only).
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Post by pjaye on Aug 25, 2015 8:55:48 GMT
You've missed the point, you don't even know enough to write an "opinion piece" You obviously don't think this child should be treated, but you have no basis for that belief, you know nothing about the treatments this child is having, you know nothing about the practice of medicine and nothing about medical ethics.
You have an opinion, but it's not based on anything factual. Having a random PhD means jack squat in something as complex and emotional as this issue. Go and get a medical degree, then when you've worked as a paediatric oncologist for 10 years, then you can write a legitimate paper. You can't "research this" (and BTW, googling it is not research)
"I don't think they should treat a child who has Down Syndrome with chemotherapy" There I've written it for you. Done.
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Post by penny on Aug 25, 2015 8:57:44 GMT
I don't get your post at all...
People with DS have an increased risk for certain health problems - heart and blood cancers included... Her doctors would have been aware and prepared for those issues to arise... The doctors/health care professionals would have let the parents know... And even if not, a Google search would bring up such basic information...
The average life expectancy for people with DS is now over the age of 50, and over 10% live to over 70... So why would you think that this child - who's experiencing medical problems that many DS patients face, would be different that those that live past 50 or even 70?
What in that Go Fund Me campaign suggested to you that this child was "too fragile" or "won't survive"?
You write: "8-10 months of 'intensive' chemotherapy", yet that's not said in the Go Fund Me, written by her father, at all... He writes, "her care is extensive and includes 8–10 months of chemotherapy and two lumbar punctures a week (spinal taps) – all in hospital away from our home on Vancouver Island." That's "extensive" care, not "intensive chemotherapy"...
Do you work in health care payments? Because I thought you worked in women's fashion/retail? And in a thread earlier today you wrote how you were upset your friend Mary was having trouble getting her glasses, and it was obvious you didn't understand how her government benefits plan affected health care payments to her eyecare provider...
And WTF? Of course someone would draw the line if she was too fragile to handle a surgery or treatment... When have you ever heard of a doctor saying, "I'm certain this is gonna kill the patient but let's operate/treat anyways"??
There is nothing in the link you posted that even hints at her being too fragile or sick to handle the treatment... You're stirring...
F*ck me. I need to figure out how to block people...
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Post by pjaye on Aug 25, 2015 9:08:45 GMT
I agree penny, this is really annoying and hit a nerve with me tonight, usually Elannah bathers on about random nothingness and I can ignore it. I have worked as a nurse in paediatric wards, I have looked after kids with cancer, I have held them when they have has procedures, held them when they were upset, hugged them with joy when they got to finally go home, and sometimes been there when they passed away and cried with their parents.
It really annoys me when someone with not a single minute of experience in this area claims they could just read a few google pages and "write an ethics paper" about this overwhelming and traumatic time in the lives of the kids and their parents. Bullshit, no you can't and it's fucking unbelievably arrogant to think you can.
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Deleted
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Post by Deleted on Aug 25, 2015 9:12:47 GMT
penny you are taking this like it is going to mean something to someone. I am not writing it. I am not. I don't have an MD or PhD. I wanted to see if I could put on paper after researching something for my OWN personal knowledge, and then hit the delete button if I so wish to. If you want to be mad at me and go so far as blocking me so you don't have to read I want to compose something on virtual paper that I have no plans to publish or let anyone else read other than me. Ok. You are welcome to never engage talk to me again. The ignore button is there. Use it.
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Deleted
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Post by Deleted on Aug 25, 2015 9:25:52 GMT
I agree penny, this is really annoying and hit a nerve with me tonight, usually Elannah bathers on about random nothingness and I can ignore it. I have worked as a nurse in paediatric wards, I have looked after kids with cancer, I have held them when they have has procedures, held them when they were upset, hugged them with joy when they got to finally go home, and sometimes been there when they passed away and cried with their parents. It really annoys me when someone with not a single minute of experience in this area claims they could just read a few google pages and "write an ethics paper" about this overwhelming and traumatic time in the lives of the kids and their parents. Bullshit, no you can't and it's fucking unbelievably arrogant to think you can. Why are you taking this so seriously? I don't want to write about life on mars. I don't want to write about the history of Johnson St. Bridge in town, I want to write for my eyes only. You are projecting onto me your anger as I have never once said I would publish it, I would do my own research on it and leave it at that. If you want to research why panda babies don't often survive into adulthood, because it interests you and you don't want to publish your research, or let anyone read what you found out, where would the problem be there? I am not writing about Little Lily. I am writing in my head at this point there is a 10 month old child who has XYZ and how much should a child have to endure to cure the child? What would the realistic longterm life expectancy be having been treated for XYX. Breathe. I could also have said what if one parent was a Christian Scientist and wanted to pursue natural and non-medical treatment of the child that involved prayer and a medical partitioner (the name of their healer) vs the other parent who wants to use modern medicine to heal the child. I would have to a) research the Christian Scientist perspective and the one of Canadian medicine. The only person who would read is me. You, too, are welcome to put me on ignore because I don't know why you are offended that I want to read, research and write something because it interests me.
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Post by penny on Aug 25, 2015 9:39:44 GMT
penny you are taking this like it is going to mean something to someone. I am not writing it. I am not. I don't have an MD or PhD. I wanted to see if I could put on paper after researching something for my OWN personal knowledge, and then hit the delete button if I so wish to. If you want to be mad at me and go so far as blocking me so you don't have to read I want to compose something on virtual paper that I have no plans to publish or let anyone else read other than me. Ok. You are welcome to never engage talk to me again. The ignore button is there. Use it. Except you did write part of it... On here, in this post... And it does mean something to some of us to hear that some children, some people are either not worth treating or are too expensive to treat... You can say all you want about not meaning anything by it and that no one should be bothered and no one would read the whole paper, but that doesn't cut it... Words have impact... And for every person with an illness or disease that's got a stigma attached to it, and for every parent here with a child that has faced a diagnosis of DS or cancer, and for every loved one and friend - your words have impact... The fact that you don't get that they have an impact pisses me off... The fact that people just shake their heads and go, "well, that's just her," pisses me off... Why should you get a free pass to say hurtful things just because it was for your own interest, or it was just a thought that popped into your head? Not the first time you've done it either... Your speculation that Chris Hyndeman, a happily married gay man, who was found dead in an alley might have a connection to "AIDS or something like that"... WTF? His mom made a statement saying he was a sleepwalker... But still you wondered if he had AIDS... I've read your posts about your family, and I wish you the best with everything... There are lots of people here who care for and enjoy your posts... I'm a blip and just can't deal with it though...
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Post by ScrapsontheRocks on Aug 25, 2015 9:42:50 GMT
I am pretty sure the newly worded "empty" title will push up the number of views, possibly even the replies. We are the Peas, after all. Holding my hands up- I am here reading and will probably check back.
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Post by penny on Aug 25, 2015 9:47:59 GMT
www.gofundme.com/akzmq2az is the link to the story as it is not too far from where I live. This baby has Down Syndrome and cancer. She is being subjected to two lumbar punctures a week and 8-10 months of "intensive" chemotherapy. Would she be treated elsewhere in the world with the attitude "save at all costs" if she is potentially that sick? Would there be someone to draw the line and say Lily is too fragile, sick and won't survive treatment? I would love to write an ethical paper on this supporting my opinion of her treatment as someone working in health care payments. I also can see it from the other side. (Perhaps a moral and religious perspective). I have no experience writing an ethical paper nor do I know my head from my foot when it comes to supporting my opinion with research and documentation. I can imagine doing the research, but ultimately there is no one who would need to read it. I had better edit this part, too in blue bold: I am not sure why two Peas are getting bent out of shape because I want to research something that interests me. It would be a work of fiction as I would not use anyone's real names or anything.
Not only that, I would not publish it. Heck I wouldn't even hit print on my printer.
I could also say I want to write a paper on why I hate wearing sunscreen and spend as little time in the sun as possible. Again, a completely pointless paper other than for my own enjoyment.
I am not thinking I am publishing anything of any importance here. It's fiction. This wasn't the original post... Forgot the rules and all that, my bad... The original post never said anything about her train of thought being a hypothetical based loosely on this Go Fund Me, or that she wanted to explore different sides to a hypothetical situation for her own interest... And now I'm writing more... Why?? Questioning the value of someone's life because of a medical diagnosis is a hot spot for me... Sorry for the drama... I'm blocking and stepping away...
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Post by pjaye on Aug 25, 2015 10:07:16 GMT
You write things on here to get a reaction, and then when you get one you try to back peddle and claim you have no idea what the problem is. As penny said you've done it a number of times, remember the "jihad" post that got locked?
The point is you write stupid shit about topics you know nothing about, and there is a large cross section of people here who actually DO have very personal experience of some of the things you take so lightly and make random insensitive statements about. The fact that you seem to think you can write any stupid shit you want and there's a section of people here who give you a free pass because they think you are mentally ill and feel sorry for you, but that doesn't give you free reign to keep spouting off your offensive thoughts with no consequences, some of us are going to call you on it.
You don't have to post every random thought that passes through your head, and if you choose to, then be prepared for people's reactions. I already know this so called "paper" probably won't get written, it won't get read by anyone outside of your family. You even saying that "I won't publish it" is ludicrous, as if you'd have any choice, no-one would stop laughing long enough to give this a second look.
It's offensive because you are saying that a child with a genetic abnormality and cancer shouldn't be treated. Your choice of words such as 'too fragile" are manipulative & completely made up by you. You have ZERO experience of anything about this situation and even claiming that you 'could' write about it is offensive because it's obvious that you take this topic so lightly that you actually believe you can. It's your use of the word "ethics" that really bugs me, as you have no knowledge of medical ethics.
If you want to write incoherent drivel, then write it about something you know, have experienced or *can* actually read about on google. Not about sick little kids with cancer and devastated parents and your "ethical" view of how they should be treated.
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Post by christine58 on Aug 25, 2015 11:12:08 GMT
I agree penny, this is really annoying and hit a nerve with me tonight, usually Elannah bathers on about random nothingness and I can ignore it. I have worked as a nurse in paediatric wards, I have looked after kids with cancer, I have held them when they have has procedures, held them when they were upset, hugged them with joy when they got to finally go home, and sometimes been there when they passed away and cried with their parents. It really annoys me when someone with not a single minute of experience in this area claims they could just read a few google pages and "write an ethics paper" about this overwhelming and traumatic time in the lives of the kids and their parents. Bullshit, no you can't and it's fucking unbelievably arrogant to think you can. Delta Dawn Is your position that this child SHOULD not be getting treatment because she has Down's Syndrome?? I really hope not. You don't work in health care payments..you work in retail. This is by far one of your most bizarre posts....
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Country Ham
Pearl Clutcher
Posts: 3,313
Jun 25, 2014 19:32:08 GMT
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Post by Country Ham on Aug 25, 2015 11:25:34 GMT
I read the go fund me, I was puzzled by what a Canadian needs 32,000 dollars over 10months for in medical expenses. The medical expenses should be paid for and that seems like a lot of money for travel/food etc for 10 months. To me the ethics of a situation like this should be more about whether both parents should quit their jobs and then ask for 32,000 thousand dollars. Back in what feels like a lifetime ago I worked pediatrics (over 14 now) before I immigrated to the US and I honestly don't remember any situations where both parents quit working to be at a child's bedside.
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Post by christine58 on Aug 25, 2015 11:33:47 GMT
I read the go fund me, I was puzzled by what a Canadian needs 32,000 dollars over 10months for in medical expenses. The medical expenses should be paid for and that seems like a lot of money for travel/food etc for 10 months. To me the ethics of a situation like this should be more about whether both parents should quit their jobs and then ask for 32,000 thousand dollars. Back in what feels like a lifetime ago I worked pediatrics (over 14 now) before I immigrated to the US and I honestly don't remember any situations where both parents quit working to be at a child's bedside. A dear friend and her husband didn't quit their jobs to travel to Duke University for their son's treatment, however, they did take unpaid leaves. Many parents have to give up jobs to travel for the best treatments for their children so yes it DOES happen.
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Deleted
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Post by Deleted on Aug 25, 2015 11:33:56 GMT
Elannah, did you speak to your doctor yet? You mentioned on a thread here recently that you needed to see your doctor, just wondering if you had your appointment yet and how it went.
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Deleted
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Post by Deleted on Aug 25, 2015 11:36:40 GMT
And now for an on-topic post... in Canada (or maybe it's Ontario? But I think it's a federal policy), there is no age of consent for medical treatment. Parents can't force children to take medical treatment if they don't want it, and neither can medical professionals. Obviously this doesn't apply in this case since the patient is unable to voice her opinion. If this is a topic that interests you, I know there are lots of cases and resources that discuss the intricacies of this topic.
ETA: running out the door to work so if I'm mistaken on some of the details, my apologies!!
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Nink
Pearl Clutcher
Posts: 4,947
Location: North Idaho
Jul 1, 2014 23:30:44 GMT
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Post by Nink on Aug 25, 2015 11:38:00 GMT
Yeah, I'm not getting your ethical dilemma here. From what I've read, I don't see anything to indicate this child won't survive treatment, on the contrary, she seems like a fighter considering what she's already been through. It sounds as if your only problem is that it's because she has DS. I hope that's not the case and I'm just misinterpreting it, because if it is I'll be forced to post what I really think right now.
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craftykitten
Pearl Clutcher
Posts: 4,304
Jun 26, 2014 7:39:32 GMT
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Post by craftykitten on Aug 25, 2015 11:38:52 GMT
As much as I understand the desire to ponder about something that interests you...sometimes you have to learn when NOT to say anything, and this is one of those times. I definitely don't understand why you can't see the links between your first nations friend who is being denied glasses, and denying medical treatment to a disabled child. This is just really weird and I think I'm the first to tag admin and ask that this thread be locked or deleted. It's a very distressing topic being discussed in a totally offensive manner.
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Post by moveablefeast on Aug 25, 2015 11:43:19 GMT
If you wanted to write it for your eyes only, why did you post it here?
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Deleted
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Post by Deleted on Aug 25, 2015 11:51:08 GMT
I read the go fund me, I was puzzled by what a Canadian needs 32,000 dollars over 10months for in medical expenses. The medical expenses should be paid for and that seems like a lot of money for travel/food etc for 10 months. To me the ethics of a situation like this should be more about whether both parents should quit their jobs and then ask for 32,000 thousand dollars. Back in what feels like a lifetime ago I worked pediatrics (over 14 now) before I immigrated to the US and I honestly don't remember any situations where both parents quit working to be at a child's bedside. I didn't read it as both needing to be at their child's bedside. I interpreted it that they both gave up work because one needed to be with their sick child and the other was needed to look after the others.....they have two other children. They may not have any relatives to help. I don't know much about that part of Canada but it sounds as if the hospital in Vancouver is some way from the Island of Vancouver where they live...is that correct? I don't think it's that great an amount for living expenses for the next 10/12 months when you consider things like Mortgage, Utilities,transport costs and possibly accommodation cost/food for the mother to stay with Lily while she is going through the treatment.
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Post by anonrefugee on Aug 25, 2015 11:56:51 GMT
And now for an on-topic post... in Canada (or maybe it's Ontario? But I think it's a federal policy), there is no age of consent for medical treatment. Parents can't force children to take medical treatment if they don't want it, and neither can medical professionals. Obviously this doesn't apply in this case since the patient is unable to voice her opinion. If this is a topic that interests you, I know there are lots of cases and resources that discuss the intricacies of this topic. ETA: running out the door to work so if I'm mistaken on some of the details, my apologies!! I didn't know that. Does that include "routine" vaccines given at 3-5 years old? Don't most kids protest those? ( not talking about an anti-vaxxer argument)
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Deleted
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Post by Deleted on Aug 25, 2015 12:01:29 GMT
It isn't? Oh shit... Delta Dawn I'm not quite sure what you hoped to achieve with this post, I'm not even sure what your ethical dilemma with the situation is. Are you saying the child shouldn't receive treatment because she has Down Syndrome? Think about your precious baby boy, wouldn't you have done anything (and I mean anything) to try to save him if he got sick? Would you have stopped and questioned if it was right or would you have done everything and anything the doctors were telling you to do? You sell frocks in a specialist retail store at least be honest about things.
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Country Ham
Pearl Clutcher
Posts: 3,313
Jun 25, 2014 19:32:08 GMT
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Post by Country Ham on Aug 25, 2015 12:01:59 GMT
As much as I understand the desire to ponder about something that interests you...sometimes you have to learn when NOT to say anything, and this is one of those times. I definitely don't understand why you can't see the links between your first nations friend who is being denied glasses, and denying medical treatment to a disabled child. This is just really weird and I think I'm the first to tag admin and ask that this thread be locked or deleted. It's a very distressing topic being discussed in a totally offensive manner. Is there another thread this is a spin off of? I scrolled back and don't see anything about being denied glasses. I don't see anything offensive being discussed here. Unless this child is related to someone on this board it's really no different then the posting of other articles of interest and discussing them.
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grinningcat
Pearl Clutcher
Posts: 4,663
Jun 26, 2014 13:06:35 GMT
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Post by grinningcat on Aug 25, 2015 12:03:54 GMT
If you wanted to write it for your eyes only, why did you post it here? That's what I was going to ask. I don't understand why someone might be interested in researching something would feel the need to post anything about it. I like researching topics of interest, yet I feel zero need to post what I'm researching here. It's one thing to want to learn more about something to be knowledgeable, it's totally another thing to want to research something and post about it on a message board. What's the end game of this? Getting permission from the peas? Attention? Pot stirring? What? What's the point of posting this under the guise of "research" other than to judge the family?
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caro
Drama Llama
Refupea 1130
Posts: 5,222
Jun 26, 2014 14:10:36 GMT
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Post by caro on Aug 25, 2015 12:04:42 GMT
If you wanted to write it for your eyes only, why did you post it here? My thoughts exactly.
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Deleted
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May 2, 2024 7:21:27 GMT
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Post by Deleted on Aug 25, 2015 12:09:29 GMT
As much as I understand the desire to ponder about something that interests you...sometimes you have to learn when NOT to say anything, and this is one of those times. I definitely don't understand why you can't see the links between your first nations friend who is being denied glasses, and denying medical treatment to a disabled child. This is just really weird and I think I'm the first to tag admin and ask that this thread be locked or deleted. It's a very distressing topic being discussed in a totally offensive manner. Is there another thread this is a spin off of? I scrolled back and don't see anything about being denied glasses. I don't see anything offensive being discussed here. Unless this child is related to someone on this board it's really no different then the posting of other articles of interest and discussing them. The OP has edited the title and the content of the opening post after the first few replies she received at the beginning of this thread.
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Post by melanell on Aug 25, 2015 12:15:50 GMT
I need to figure out how to block people... It's super easy if you really want to do it. Simple click on the person's name, over on the left near their avatar photo. It will open a box about their profile and the far right side will be a little gear with an arrow. Click on the arrow and you will be given the option "Block Member" right at the top.
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