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Charlie Gard

A touchy one this, but as a new parent I find i'm glued to it.

The latest twist is as brutal as many before. They want evidence the treatment can work by 2pm today... It's a brand new treatment that has worked for similar cases.

Surely the parents could afford (from the money raised) to have someone privately fly over give the care and attention needed for transit and to take Charlie to the states for treatment?

The so called medical experts 5 years ago made mistakes regarding treatments etc rejecting medications that had not only been tested but worked for similar cases... what is to say that they wouldn't work here? Why is it okay for the British courts to rule against trying to save the little guy.

If he truly is as brain damaged as they say, the worst that will happen is they're proven right. The best that could happen is Charley makes some kind of recovery and is able to breath on his own again.

What are other Lifer's thoughts on this case?
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Comments

  • Dazzler21 said:

    A touchy one this, but as a new parent I find i'm glued to it.

    The latest twist is as brutal as many before. They want evidence the treatment can work by 2pm today... It's a brand new treatment that has worked for similar cases.

    Surely the parents could afford (from the money raised) to have someone privately fly over give the care and attention needed for transit and to take Charlie to the states for treatment?

    The so called medical experts 5 years ago made mistakes regarding treatments etc rejecting medications that had not only been tested but worked for similar cases... what is to say that they wouldn't work here? Why is it okay for the British courts to rule against trying to save the little guy.

    If he truly is as brain damaged as they say, the worst that will happen is they're proven right. The best that could happen is Charley makes some kind of recovery and is able to breath on his own again.

    What are other Lifer's thoughts on this case?

    I thought the concern of the medical experts was that whilst he could not communicate at all there was a likelihood he could feel pain and whilst there was little chance of success of any kind with this experimental treatments there was a chance he has been lying there in agony and no way to communicate it.
  • Difficult one as am sure a lot of our opinions are going to clash with what others will see as right and wrong...

    Mine is quite simple as I'm struggling to understand how the judges can actually get involved with this

    i.e. Countless adults have gone to the courts to ask to be allowed to end their lives because they've got a terminal illness whether it be cancer or even more sinister like Motor Neurons Disease which is a death sentence... Whenever these cases go to the courts its always the same answer... NO, your not allowed to end your life and anyone who helps you go to Switzerland etc. can eventually be prosecuted themselves for manslaughter (I think it is).

    Because of that reason I dont think the courts should be allowed to say where little Charlie is allowed to live or die... In a way they've set an example in the past by refusing to allow grown adults receive treatment themselves and that if they stand by their decision (and demand that Charlie isnt allowed to receive the foreign treatment) then everything should be reviewed in this sort of case.

    As it is I also agree with your comment @Dazzle21... the worst that can happen is the current experts will be proven right and Charlie will die... Yet there is still a chance he can make a recovery and aid others who have the same issue later on in years to come

    Its almost a case I feel as though the Doctors against the treatment are almost trying not to lose face, i.e. if Charlie recovers then it really raises questions about their ability to do their job!!
  • colthe3rd said:


    Would my opinion change if it was my child? Absolutely. So I can understand the parents battle.

    Would it though? You wouldn't put a dog or any other animal through this but it's okay for a child?
  • The latest judge ruled based on Charlie's dignity.

    Dignity is defined as "the state or quality of being worthy of honour or respect."
    Surely a baby is worthy of honour or respect by default. The parents are going above and beyond this IMO. They are doing whatever they can to let him live. They are accepting the weight of the challenges that will come with that.

    I would happily live a long and fruitful life or die without dignity because I had an experimental treatment to cure myself than die without trying the treatment at all.

    As Charlie is unable to make that call, the parents should decide. I as a parent can guarantee I would try everything before being forced to admit there was nothing to be done.

    Forcing these parents to let their child die without an attempt at getting him a treatment that may well only have a 10% chance of keeping him alive, purely based on the fact he was born in the UK and not the USA is cruel not only to Charlie, but to the parents too.

    If he doesn't end up getting treated, I could see this tipping the parents over the edge.
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  • edited July 12
    bobmunro said:

    A tragic case.

    However what you are suggesting is unlawful if the drug(s), as I understand it, are not authorised to be used in the UK. Assisted suicide is illegal here but not in for example Switzerland where people can go to Dignitas should they wish - officers of Dignitas cannot come to the UK to carry out the assisted suicide. Poor Charlie would have to go to America.

    The medics here are saying, in their professional opinion, that further treatment is futile - and as an outsider that would appear to be that. For the parents of course it isn't something they wish to accept but the law must take priority over totally understandable emotions.

    As I said, tragic.

    I suggested they come here, help him travel there and carry out the treatment in the USA.

    I don't disagree it is tragic.

    I personally feel that if there is any belief at all the treatment may help, it should be investigated and attempted. Surely a 1% chance of survival is better than a 0% chance if you take him off life support without trying.
  • Whatever happens it will desperately sad that it took so long to reach this point as I have no doubt that his condition can only have deteriorated during the process.
  • Dazzler21 said:

    The latest judge ruled based on Charlie's dignity.

    Dignity is defined as "the state or quality of being worthy of honour or respect."
    Surely a baby is worthy of honour or respect by default. The parents are going above and beyond this IMO. They are doing whatever they can to let him live. They are accepting the weight of the challenges that will come with that.

    I would happily live a long and fruitful life or die without dignity because I had an experimental treatment to cure myself than die without trying the treatment at all.

    As Charlie is unable to make that call, the parents should decide. I as a parent can guarantee I would try everything before being forced to admit there was nothing to be done.

    Forcing these parents to let their child die without an attempt at getting him a treatment that may well only have a 10% chance of keeping him alive, purely based on the fact he was born in the UK and not the USA is cruel not only to Charlie, but to the parents too.

    If he doesn't end up getting treated, I could see this tipping the parents over the edge.

    No - the laws around child welfare in the UK are designed to be absolutely child focused - and amen to that. The medical opinion is saying one thing, the parents wish another - it is for the law to determine what is in the best interests of the child.
  • As a parent of 4 I cannot even imagine what the poor parents are going though, same with Bradley Lowery's parents it's a totally heartbreaking time for all of them! Just hope little Charlie fights , hope the parents get the help they need
  • edited July 12

    As a parent, you'd cling to any hope, no matter how small that it would work. Don't think I could live with myself if I didn't give it a shot.

    Horrible situation for them.

    To be honest, I'm not sure I would (and I am a parent) - in these circumstances, I think I'd side with the doctors and want to end his suffering.

    Easy to say though, I guess being in the situation I might act differently, who knows.

    This is 100 % how I view it as well. (I am also a parent).

  • Every doctor involved directly with the case has concurred. And we're talking about the docs at Great Ormond Street, the one place where I wouldn't expect, for one moment, a doctor to put his or her pride above the best course of action for a child. They've made it quite clear that even if the so-called experimental treatment worked, it can't undo the brain damage already suffered. This is a hopeless case, as sad as that is to admit.

    When I first heard about the case, I saw the donation page and immediately donated (partly cos they'd only raised 10k at that point). But that was when I knew almost nothing about what was happening to Charlie. And I think that knee-jerk reaction has seen a lot of people get quite upset about the thought of "letting a baby die".

    And plenty of people have now chimed in on it now, and you have to question their motives. I'm not too sure it's all about compassion and generosity.
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  • cafcfan said:

    colthe3rd said:


    Would my opinion change if it was my child? Absolutely. So I can understand the parents battle.

    Would it though? You wouldn't put a dog or any other animal through this but it's okay for a child?
    Don't think you can compare dogs to humans in this case and I say that as someone who generally thinks dogs are better than humans.

    My point is that all rationality would go out the window if it was your own child. I'd like to think I would take on all the expert opinions and make an informed decision but I highly doubt it.
  • colthe3rd said:

    cafcfan said:

    colthe3rd said:


    Would my opinion change if it was my child? Absolutely. So I can understand the parents battle.

    Would it though? You wouldn't put a dog or any other animal through this but it's okay for a child?
    Don't think you can compare dogs to humans in this case and I say that as someone who generally thinks dogs are better than humans.

    My point is that all rationality would go out the window if it was your own child. I'd like to think I would take on all the expert opinions and make an informed decision but I highly doubt it.
    I understand what you are saying in that it is hard to be rational in these situations. However I don't feel like you even need medical experts in this case to know that if kept alive you would be subjecting your own child to a horrid, painful and very limited life.

    Having a reasonable amount of experience in this area, as sad as it is, in the long run it is very difficult to lead a normal life as parents when having to look after someone with a life limiting illness and sometimes you also have to look into what is best for your future as well.
  • colthe3rd said:

    I've read that they aren't that similar as Charlie has some mutation that means this would be the first time it's been tried on someone like him. There is also no guarantee he would survive the flight.

    Personally I have to side with the Doctors on this one as firstly they know what they're talking about versus Joe public and second this isn't a money issue, as in it isn't because the cost of treatment is the problem. It genuinely seems to be done as they have the interests of the child at heart.

    Would my opinion change if it was my child? Absolutely. So I can understand the parents battle.

    You nailed it for me.
  • edited July 12
    One thing that's not been mentioned is that poor Charlie will in many ways be a guinea pig for this treatment......evidently it's never been used on anyone who has this particular level, progression or type of illness.
    One has to say that if the treatment went ahead and whatever the outcome, medical science will at least gain some knowledge which may well be of significant help in the future treatment and way forward.
    I don't think that should be entirely overlooked either, providing of course Charlie has no further suffering as a result.
  • The parents aren't thinking rationally, nor should we be expecting them to. You have to trust the experts who have been doing this job for years and know what they're talking about. It's a heart breaking situation for everyone.
  • edited July 12

    One thing that's not been mentioned is that poor Charlie will in many ways be a guinea pig for this treatment......evidently it's never been used on anyone who has this particular level, progression or type of illness.
    One has to say that if the treatment went ahead and whatever the outcome, medical science will at least gain some knowledge which may well be of significant help in the future treatment and way forward.
    I don't think that should be entirely overlooked either, providing of course Charlie has no further suffering as a result.

    But that's what the doctors are saying.. any further treatment will cause significant pain with no gain for Charlie.
  • Great point Sound,
    se9addick said:

    Dazzler21 said:

    The latest judge ruled based on Charlie's dignity.

    Dignity is defined as "the state or quality of being worthy of honour or respect."
    Surely a baby is worthy of honour or respect by default. The parents are going above and beyond this IMO. They are doing whatever they can to let him live. They are accepting the weight of the challenges that will come with that.

    I would happily live a long and fruitful life or die without dignity because I had an experimental treatment to cure myself than die without trying the treatment at all.

    As Charlie is unable to make that call, the parents should decide. I as a parent can guarantee I would try everything before being forced to admit there was nothing to be done.

    Forcing these parents to let their child die without an attempt at getting him a treatment that may well only have a 10% chance of keeping him alive, purely based on the fact he was born in the UK and not the USA is cruel not only to Charlie, but to the parents too.

    If he doesn't end up getting treated, I could see this tipping the parents over the edge.

    I don't get why you think the parents should decide ? Parents get to decide what a child has for dinner, not whether their child should live in pain and misery with no realistic hope of a cure.

    I understand why the parents would fight it but I don't think they should be allowed to win.
    Maybe it's the emotion tied to being a parent, where I feel sick thinking about the what if of my little girl being in that situation...

    There is no cure agreed, but the family obviously believe that there is a chance the child will get better to a degree, whether that's the US selling them a dream they'll never have or whether it is a realistic possibility if I thought it were possible I'd fight. If I thought it might help to save another child in future even if it didn't save mine. It'd have been worth it.
  • One thing that's not been mentioned is that poor Charlie will in many ways be a guinea pig for this treatment......evidently it's never been used on anyone who has this particular level, progression or type of illness.
    One has to say that if the treatment went ahead and whatever the outcome, medical science will at least gain some knowledge which may well be of significant help in the future treatment and way forward.
    I don't think that should be entirely overlooked either, providing of course Charlie has no further suffering as a result.

    But that's what the doctors are saying.. any further treatment will cause significant pain with no gain for Charlie.
    Oh are they Callum......I hadn't picked that up.
    Mmmmm.......what a dilemma.

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