Charlie Gard

2

Comments

  • BentleyspopBentleyspop Posts: 10,765
    rgambs said:
    the family is in denial. 

    this is not a decision that the doctors on the court take lightly. the kid can't see, hear, speak, or swallow. his lungs do not work on his own. he would have to be on a ventilator and a feeding tube his whole life, as he has up until this point. the kid will not regain consciousness and he will not survive.. these are hard truths. that 1.8 million dollars would be exhausted in less than 2 years.
    I hear you. But I also hear what Unsung is saying.

    As wise as it might be... the courts should probably not make the decision for the parents. If the parents are made aware of the potential... it's really up to them.
    The whole point is that the courts aren't making the decision for the parents, they are making the decision for Charlie.
    They are trying to protect him from his parents, who want to prolong his suffering.

    I'd like to think I would have the strength to do the right thing and let go if I was in their position, but nobody really knows until the time comes.
    Exactly!!
    This  is very selfish behavior on the part of the parents.
    Prolonging anyone's life, whether  a child or an adult, because of some misguided belief that they will survive and have a "notmal" life is just plain selfish and mean.
  • gimmesometruth27gimmesometruth27 Posts: 23,303
    the parents need to accept the reality of their situation. there would be more dignity in it. 

    if that makes me sound cold, i am sorry. but this is the reality they are in.
    We are on the sidelines though.

    The parents are not evil here (and I know this is not what you are implying). They are just broken and desperate.
    working in medicine, i get it. but at some point they must realize that they are not helping their child. they are tying up resources that could be used to help other people who have a better prognosis.

    we look at medical facts and make decisions accordingly. emotions have to be taken out of it.

    "You can tell the greatness of a man by what makes him angry."  - Lincoln

    "Well, you tell him that I don't talk to suckas."
  • rgambs said:
    the family is in denial. 

    this is not a decision that the doctors on the court take lightly. the kid can't see, hear, speak, or swallow. his lungs do not work on his own. he would have to be on a ventilator and a feeding tube his whole life, as he has up until this point. the kid will not regain consciousness and he will not survive.. these are hard truths. that 1.8 million dollars would be exhausted in less than 2 years.
    I hear you. But I also hear what Unsung is saying.

    As wise as it might be... the courts should probably not make the decision for the parents. If the parents are made aware of the potential... it's really up to them.
    The whole point is that the courts aren't making the decision for the parents, they are making the decision for Charlie.
    They are trying to protect him from his parents, who want to prolong his suffering.

    I'd like to think I would have the strength to do the right thing and let go if I was in their position, but nobody really knows until the time comes.
    Exactly!!
    This  is very selfish behavior on the part of the parents.
    Prolonging anyone's life, whether  a child or an adult, because of some misguided belief that they will survive and have a "notmal" life is just plain selfish and mean.
    I wouldn't describe it like this at all.

    Pretty judgemental given you are talking about parents trying anything they can to keep their infant alive. What if, during the 'futile process', a cure was discovered? 

    I realize the the reality of the situation, but come on man... the parents are selfish and mean? Parents that are selfish and mean in my books are the ones that offer no love and abdicate their responsibility. This situation is borne from love.
    "My brain's a good brain!"
  • gimmesometruth27gimmesometruth27 Posts: 23,303
    rgambs said:
    the family is in denial. 

    this is not a decision that the doctors on the court take lightly. the kid can't see, hear, speak, or swallow. his lungs do not work on his own. he would have to be on a ventilator and a feeding tube his whole life, as he has up until this point. the kid will not regain consciousness and he will not survive.. these are hard truths. that 1.8 million dollars would be exhausted in less than 2 years.
    I hear you. But I also hear what Unsung is saying.

    As wise as it might be... the courts should probably not make the decision for the parents. If the parents are made aware of the potential... it's really up to them.
    The whole point is that the courts aren't making the decision for the parents, they are making the decision for Charlie.
    They are trying to protect him from his parents, who want to prolong his suffering.

    I'd like to think I would have the strength to do the right thing and let go if I was in their position, but nobody really knows until the time comes.
    Exactly!!
    This  is very selfish behavior on the part of the parents.
    Prolonging anyone's life, whether  a child or an adult, because of some misguided belief that they will survive and have a "notmal" life is just plain selfish and mean.
    I wouldn't describe it like this at all.

    Pretty judgemental given you are talking about parents trying anything they can to keep their infant alive. What if, during the 'futile process', a cure was discovered? 

    I realize the the reality of the situation, but come on man... the parents are selfish and mean? Parents that are selfish and mean in my books are the ones that offer no love and abdicate their responsibility. This situation is borne from love.
    you are thinking about this emotionally, not rationally.
    "You can tell the greatness of a man by what makes him angry."  - Lincoln

    "Well, you tell him that I don't talk to suckas."
  • the parents need to accept the reality of their situation. there would be more dignity in it. 

    if that makes me sound cold, i am sorry. but this is the reality they are in.
    We are on the sidelines though.

    The parents are not evil here (and I know this is not what you are implying). They are just broken and desperate.
    working in medicine, i get it. but at some point they must realize that they are not helping their child. they are tying up resources that could be used to help other people who have a better prognosis.

    we look at medical facts and make decisions accordingly. emotions have to be taken out of it.

    So we are deciding the point at which they should get it?

    Maybe. 

    I just see their perspective and I think it's a fine line where parents in such cases are told to give up.

    * I'm in agreement with the decision. I'm just not quite sure I'm right being in agreement with the decision. This isn't as cut and dry as it's made out to be.
    "My brain's a good brain!"
  • oftenreadingoftenreading Posts: 12,845
    Unsung, where do you stand when courts intervene to save the life of a child when the parents' beliefs cause them to refuse necessary, life saving treatment, such as JWs who refuse transfusions on religious grounds, or parents who believe "alternative medicine" will cure cancer? You're against court intervention in those cases, too? 
    my small self... like a book amongst the many on a shelf
  • rgambs said:
    the family is in denial. 

    this is not a decision that the doctors on the court take lightly. the kid can't see, hear, speak, or swallow. his lungs do not work on his own. he would have to be on a ventilator and a feeding tube his whole life, as he has up until this point. the kid will not regain consciousness and he will not survive.. these are hard truths. that 1.8 million dollars would be exhausted in less than 2 years.
    I hear you. But I also hear what Unsung is saying.

    As wise as it might be... the courts should probably not make the decision for the parents. If the parents are made aware of the potential... it's really up to them.
    The whole point is that the courts aren't making the decision for the parents, they are making the decision for Charlie.
    They are trying to protect him from his parents, who want to prolong his suffering.

    I'd like to think I would have the strength to do the right thing and let go if I was in their position, but nobody really knows until the time comes.
    Exactly!!
    This  is very selfish behavior on the part of the parents.
    Prolonging anyone's life, whether  a child or an adult, because of some misguided belief that they will survive and have a "notmal" life is just plain selfish and mean.
    I wouldn't describe it like this at all.

    Pretty judgemental given you are talking about parents trying anything they can to keep their infant alive. What if, during the 'futile process', a cure was discovered? 

    I realize the the reality of the situation, but come on man... the parents are selfish and mean? Parents that are selfish and mean in my books are the ones that offer no love and abdicate their responsibility. This situation is borne from love.
    you are thinking about this emotionally, not rationally.
    Is a cure 100% out of the realm of possibility?

    We just spoke to the genius of prosthetics linked to nervous systems.
    "My brain's a good brain!"
  • gimmesometruth27gimmesometruth27 Posts: 23,303
    rgambs said:
    the family is in denial. 

    this is not a decision that the doctors on the court take lightly. the kid can't see, hear, speak, or swallow. his lungs do not work on his own. he would have to be on a ventilator and a feeding tube his whole life, as he has up until this point. the kid will not regain consciousness and he will not survive.. these are hard truths. that 1.8 million dollars would be exhausted in less than 2 years.
    I hear you. But I also hear what Unsung is saying.

    As wise as it might be... the courts should probably not make the decision for the parents. If the parents are made aware of the potential... it's really up to them.
    The whole point is that the courts aren't making the decision for the parents, they are making the decision for Charlie.
    They are trying to protect him from his parents, who want to prolong his suffering.

    I'd like to think I would have the strength to do the right thing and let go if I was in their position, but nobody really knows until the time comes.
    Exactly!!
    This  is very selfish behavior on the part of the parents.
    Prolonging anyone's life, whether  a child or an adult, because of some misguided belief that they will survive and have a "notmal" life is just plain selfish and mean.
    I wouldn't describe it like this at all.

    Pretty judgemental given you are talking about parents trying anything they can to keep their infant alive. What if, during the 'futile process', a cure was discovered? 

    I realize the the reality of the situation, but come on man... the parents are selfish and mean? Parents that are selfish and mean in my books are the ones that offer no love and abdicate their responsibility. This situation is borne from love.
    you are thinking about this emotionally, not rationally.
    Is a cure 100% out of the realm of possibility?

    We just spoke to the genius of prosthetics linked to nervous systems.
    yes. based on the findings of these doctors, a cure is 100% out of the realm of possibility. otherwise they would have granted them permission to travel for the experimental treatment. with that treatment, the best case scenario is the kid carries on in the state that he is in. unconscious, unable to breathe on his own, unable to eat and drink on his own, unable to walk, etc. just alive, but not really living.

    worst case scenario, the family flies a corpse along with feeding machine and ventilator back to england. 

    look up genetic mitochondrial disorders. some are treatable. the ones that are treatable, the kids are either on oxygen or feeding tubes and wheelchair bound for their entire short lifespan. this is not something that i would want for my kid or any kid to have to live with.

    prosthetics are one thing. mitochondria is what provide energy to cells for cells, tissues, and organs to function properly. if you have a major problem with something at the cellular level, you are in huge trouble. the cellular level is where everything happens. it is the base of the house of cards. you pull a card from the base and the whole thing is unable to stand.
    "You can tell the greatness of a man by what makes him angry."  - Lincoln

    "Well, you tell him that I don't talk to suckas."
  • gimmesometruth27gimmesometruth27 Posts: 23,303
    the parents need to accept the reality of their situation. there would be more dignity in it. 

    if that makes me sound cold, i am sorry. but this is the reality they are in.
    We are on the sidelines though.

    The parents are not evil here (and I know this is not what you are implying). They are just broken and desperate.
    working in medicine, i get it. but at some point they must realize that they are not helping their child. they are tying up resources that could be used to help other people who have a better prognosis.

    we look at medical facts and make decisions accordingly. emotions have to be taken out of it.

    So we are deciding the point at which they should get it?

    Maybe. 

    I just see their perspective and I think it's a fine line where parents in such cases are told to give up.

    * I'm in agreement with the decision. I'm just not quite sure I'm right being in agreement with the decision. This isn't as cut and dry as it's made out to be.
    i see the parents' perspective too. but there is a time when someone who does not want to believe a prognosis has to accept that prognosis and stop living in denial.
    "You can tell the greatness of a man by what makes him angry."  - Lincoln

    "Well, you tell him that I don't talk to suckas."
  • rgambs said:
    the family is in denial. 

    this is not a decision that the doctors on the court take lightly. the kid can't see, hear, speak, or swallow. his lungs do not work on his own. he would have to be on a ventilator and a feeding tube his whole life, as he has up until this point. the kid will not regain consciousness and he will not survive.. these are hard truths. that 1.8 million dollars would be exhausted in less than 2 years.
    I hear you. But I also hear what Unsung is saying.

    As wise as it might be... the courts should probably not make the decision for the parents. If the parents are made aware of the potential... it's really up to them.
    The whole point is that the courts aren't making the decision for the parents, they are making the decision for Charlie.
    They are trying to protect him from his parents, who want to prolong his suffering.

    I'd like to think I would have the strength to do the right thing and let go if I was in their position, but nobody really knows until the time comes.
    Exactly!!
    This  is very selfish behavior on the part of the parents.
    Prolonging anyone's life, whether  a child or an adult, because of some misguided belief that they will survive and have a "notmal" life is just plain selfish and mean.
    I wouldn't describe it like this at all.

    Pretty judgemental given you are talking about parents trying anything they can to keep their infant alive. What if, during the 'futile process', a cure was discovered? 

    I realize the the reality of the situation, but come on man... the parents are selfish and mean? Parents that are selfish and mean in my books are the ones that offer no love and abdicate their responsibility. This situation is borne from love.
    you are thinking about this emotionally, not rationally.
    Is a cure 100% out of the realm of possibility?

    We just spoke to the genius of prosthetics linked to nervous systems.
    yes. based on the findings of these doctors, a cure is 100% out of the realm of possibility. otherwise they would have granted them permission to travel for the experimental treatment. with that treatment, the best case scenario is the kid carries on in the state that he is in. unconscious, unable to breathe on his own, unable to eat and drink on his own, unable to walk, etc. just alive, but not really living.

    worst case scenario, the family flies a corpse along with feeding machine and ventilator back to england. 

    look up genetic mitochondrial disorders. some are treatable. the ones that are treatable, the kids are either on oxygen or feeding tubes and wheelchair bound for their entire short lifespan. this is not something that i would want for my kid or any kid to have to live with.

    prosthetics are one thing. mitochondria is what provide energy to cells for cells, tissues, and organs to function properly. if you have a major problem with something at the cellular level, you are in huge trouble. the cellular level is where everything happens. it is the base of the house of cards. you pull a card from the base and the whole thing is unable to stand.
    Damn
    "My brain's a good brain!"
  • gimmesometruth27gimmesometruth27 Posts: 23,303
    rgambs said:
    the family is in denial. 

    this is not a decision that the doctors on the court take lightly. the kid can't see, hear, speak, or swallow. his lungs do not work on his own. he would have to be on a ventilator and a feeding tube his whole life, as he has up until this point. the kid will not regain consciousness and he will not survive.. these are hard truths. that 1.8 million dollars would be exhausted in less than 2 years.
    I hear you. But I also hear what Unsung is saying.

    As wise as it might be... the courts should probably not make the decision for the parents. If the parents are made aware of the potential... it's really up to them.
    The whole point is that the courts aren't making the decision for the parents, they are making the decision for Charlie.
    They are trying to protect him from his parents, who want to prolong his suffering.

    I'd like to think I would have the strength to do the right thing and let go if I was in their position, but nobody really knows until the time comes.
    Exactly!!
    This  is very selfish behavior on the part of the parents.
    Prolonging anyone's life, whether  a child or an adult, because of some misguided belief that they will survive and have a "notmal" life is just plain selfish and mean.
    I wouldn't describe it like this at all.

    Pretty judgemental given you are talking about parents trying anything they can to keep their infant alive. What if, during the 'futile process', a cure was discovered? 

    I realize the the reality of the situation, but come on man... the parents are selfish and mean? Parents that are selfish and mean in my books are the ones that offer no love and abdicate their responsibility. This situation is borne from love.
    you are thinking about this emotionally, not rationally.
    Is a cure 100% out of the realm of possibility?

    We just spoke to the genius of prosthetics linked to nervous systems.
    yes. based on the findings of these doctors, a cure is 100% out of the realm of possibility. otherwise they would have granted them permission to travel for the experimental treatment. with that treatment, the best case scenario is the kid carries on in the state that he is in. unconscious, unable to breathe on his own, unable to eat and drink on his own, unable to walk, etc. just alive, but not really living.

    worst case scenario, the family flies a corpse along with feeding machine and ventilator back to england. 

    look up genetic mitochondrial disorders. some are treatable. the ones that are treatable, the kids are either on oxygen or feeding tubes and wheelchair bound for their entire short lifespan. this is not something that i would want for my kid or any kid to have to live with.

    prosthetics are one thing. mitochondria is what provide energy to cells for cells, tissues, and organs to function properly. if you have a major problem with something at the cellular level, you are in huge trouble. the cellular level is where everything happens. it is the base of the house of cards. you pull a card from the base and the whole thing is unable to stand.
    Damn
    yeah man, its pretty terrible. some of these genetic conditions are just untreatable. talk about things not being fair. this poor kid was not born with the proper means to survive and thrive. 
    "You can tell the greatness of a man by what makes him angry."  - Lincoln

    "Well, you tell him that I don't talk to suckas."
  • gimmesometruth27gimmesometruth27 Posts: 23,303
    "You can tell the greatness of a man by what makes him angry."  - Lincoln

    "Well, you tell him that I don't talk to suckas."
  • ^^^
    I could not imagine having to exhaust all options only to lead to the conclusion that death is the only one.  I feel for the parents as strongly as I do for that life that is still alive.  Fuck.
  • From the POTUS....
    If we can help little #CharlieGard, as per our friends in the U.K. and the Pope, we would be delighted to do so.


  • rgambsrgambs Posts: 13,576
    This must be all the rage on the altnews sites if Trump is picking it up.

    We are lucky to have someone here who keeps us abreast of what's happening at Stormfront before it hits the mainstream!
    Monkey Driven, Call this Living?
  • gimmesometruth27gimmesometruth27 Posts: 23,303
    the pope has reversed it's decision and is saying they should be allowed to pursue the experimental treatment. whatever makes you feel better i supposed. 

    it is like the Metallica video One. best case scenario is this child would be a piece of meat that keeps on living.
    "You can tell the greatness of a man by what makes him angry."  - Lincoln

    "Well, you tell him that I don't talk to suckas."
  • JC29856JC29856 Posts: 9,617
    I thought the baby Charlie can see and interact... misinformation?

    anyone who thinks parents know what's best for their kids should observe the concessions at movie theaters. 
    one step further, how about the vaccination schedules for new borns to 4 months!
  • gimmesometruth27gimmesometruth27 Posts: 23,303
    JC29856 said:
    I thought the baby Charlie can see and interact... misinformation?

    anyone who thinks parents know what's best for their kids should observe the concessions at movie theaters. 
    one step further, how about the vaccination schedules for new borns to 4 months!
    parents think they know all about vaccinations too... don't even get me started on that. that mercury and autism lie has been debunked tens of times.
    "You can tell the greatness of a man by what makes him angry."  - Lincoln

    "Well, you tell him that I don't talk to suckas."
  • JC29856JC29856 Posts: 9,617
    JC29856 said:
    I thought the baby Charlie can see and interact... misinformation?

    anyone who thinks parents know what's best for their kids should observe the concessions at movie theaters. 
    one step further, how about the vaccination schedules for new borns to 4 months!
    parents think they know all about vaccinations too... don't even get me started on that. that mercury and autism lie has been debunked tens of times.
    comment wasn't directed at mercury or autism, ignoring the compounds in the injections I was simply speaking to the number of injections for an underdeveloped undeveloped system. 
  • rgambsrgambs Posts: 13,576
    JC29856 said:
    JC29856 said:
    I thought the baby Charlie can see and interact... misinformation?

    anyone who thinks parents know what's best for their kids should observe the concessions at movie theaters. 
    one step further, how about the vaccination schedules for new borns to 4 months!
    parents think they know all about vaccinations too... don't even get me started on that. that mercury and autism lie has been debunked tens of times.
    comment wasn't directed at mercury or autism, ignoring the compounds in the injections I was simply speaking to the number of injections for an underdeveloped undeveloped system. 
    Pseudo-science

    Ignore medical consensus and go with your own "common sense".
    That's exactly why children need protection from their parents.  It's adjacent to prayer healing.
    Monkey Driven, Call this Living?
  • oftenreadingoftenreading Posts: 12,845
    JC29856 said:
    JC29856 said:
    I thought the baby Charlie can see and interact... misinformation?

    anyone who thinks parents know what's best for their kids should observe the concessions at movie theaters. 
    one step further, how about the vaccination schedules for new borns to 4 months!
    parents think they know all about vaccinations too... don't even get me started on that. that mercury and autism lie has been debunked tens of times.
    comment wasn't directed at mercury or autism, ignoring the compounds in the injections I was simply speaking to the number of injections for an underdeveloped undeveloped system. 

    There is a huge amount of research around this. The childhood immunization schedule is based on protecting infants from diseases for which they have little to no other protection and which can be serious or fatal if they contract them.

    Infant immune systems are challenged by an uncountable number of compounds on a daily basis and they respond admirably.
    my small self... like a book amongst the many on a shelf
  • JC29856JC29856 Posts: 9,617
    common sense tells me to only allow vaccines (or soaps shampoos lotions toys clothing food etc) that's warranted as safe and effective.
  • oftenreadingoftenreading Posts: 12,845
    Life does not give a guarantee that it is safe. There is risk in everything. There is risk in not vaccinating. There is risk in every food you feed your child, every product you use with or on them, every toy they play with, everything activity you do with them. You take a higher risk every time you drive with them in your car than any time they get vaccinated. We like to think we can control these risks but that's just a human response that keeps us from panicking every moment of the day. We can't. We can just try to balance the risks and make reasoned decisions, not those borne from anxiety and misinformation.
    my small self... like a book amongst the many on a shelf
  • bootlegger10bootlegger10 Posts: 15,942
    It sucks but people die sometime to no fault of their own. At 90 yrs old and at 2 years old. Really sucks.   There has to be some sort of line to use money wisely on health care.  I don't want to pay high health insurance premiums because people spend millions to extend their lives another few weeks or months, or on a Hail Mary procedure.    Now if people raise private money for a procedure than it seems like they should be able to do it, unless it is just torturing the patient unnecessarily.  


  • oftenreadingoftenreading Posts: 12,845
    Another article with a bit more information about Charlie.

    http://nationalpost.com/news/world/trump-offers-help-to-a-terminally-ill-british-baby/wcm/61b14d89-f995-4265-9bda-fa5c5127b9e4

    He has irreversible brain damage. Even if the experimental treatment was "effective" regarding his mitochonrial disorder, it could not reverse his brain damage, and thus his condition can not improve. And it's not in this article, but I've read elsewhere that the researcher who developed this treatment acknowledges that it is extremely unlikely to work for Charlie as it was not developed for his condition, but rather for a different disorder, and has never been tried in his condition.
    my small self... like a book amongst the many on a shelf
  • Gern BlanstenGern Blansten Posts: 20,275
    unsung said:
    I don't care if it takes 100 opinions, it should be the decision of the parents to cease treatment, not the courts.


    Disagree....if the medical experts believe the well being of the child is being abused (which is the case here) then the courts should step in and stop it.

    This isn't a money issue...that's obvious.  The "government" in this case is protecting one of its citizens.
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  • benjsbenjs Posts: 9,144
    edited July 2017
    unsung said:
    I don't care if it takes 100 opinions, it should be the decision of the parents to cease treatment, not the courts.


    Disagree....if the medical experts believe the well being of the child is being abused (which is the case here) then the courts should step in and stop it.

    This isn't a money issue...that's obvious.  The "government" in this case is protecting one of its citizens.
    The problem that people don't want to face is that when there is a certainty of pain with one action, and of death with another, there must be a cold calculation made to decide which action produces the higher quality of life, and it cannot and should not be emotional. If the degree of certainty of pain is high enough, the degree of uncertainty of a cure is high enough, the quality of life is low enough as that pain endures - then the sad reality is that a painless death provides a higher quality of life (0) than the negative net quality of life the child has today.
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  • cincybearcatcincybearcat Posts: 16,445
    unsung said:
    I don't care if it takes 100 opinions, it should be the decision of the parents to cease treatment, not the courts.


    Disagree....if the medical experts believe the well being of the child is being abused (which is the case here) then the courts should step in and stop it.

    This isn't a money issue...that's obvious.  The "government" in this case is protecting one of its citizens.
    Hmmm...this is a very difficult case for me to consider.  Emotionally I want the parents to decide for their child.  I have a hard time with someone telling the parents that their child must die.   But I get the medical prognosis.  Such a sad thing all around.

    But to call the parents selfish is way the hell out of line.
    hippiemom = goodness
  • unsung said:
    I don't care if it takes 100 opinions, it should be the decision of the parents to cease treatment, not the courts.


    Disagree....if the medical experts believe the well being of the child is being abused (which is the case here) then the courts should step in and stop it.

    This isn't a money issue...that's obvious.  The "government" in this case is protecting one of its citizens.
    Hmmm...this is a very difficult case for me to consider.  Emotionally I want the parents to decide for their child.  I have a hard time with someone telling the parents that their child must die.   But I get the medical prognosis.  Such a sad thing all around.

    But to call the parents selfish is way the hell out of line.
    I know what Bentley is saying though. at some point you have to wonder, do they want their child to survive and be a vegetable for the child, or for themselves? as a parent, I can't imagine the pain. But at some point, gimme's right, you have to face the reality and let go. 
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  • Unsung, where do you stand when courts intervene to save the life of a child when the parents' beliefs cause them to refuse necessary, life saving treatment, such as JWs who refuse transfusions on religious grounds, or parents who believe "alternative medicine" will cure cancer? You're against court intervention in those cases, too? 
    was just coming here to pose the same question. 
    new album "Cigarettes" out Spring 2025!

    www.headstonesband.com




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