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Against his parents’ wishes, terminally ill infant will be allowed to die

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Having kids IS different. But it is silly to blame people or discount their opinion on that fact.

You don't lack empathy by being logical as an outsider and agreeing with this correct decision.

I have made, the decision to let my own mother "go", will eventually have to male the same call with my terminally ill father and am a father of a special needs six year old as I have spoken on many times on these forums. If people want "qualifications" to back up their agreement to this court decision.

You do not selfishly allow someone you love to suffer needlessly because you cannot let go. You are mentally torturing yourself by holding onto uninformed and unqualified opinions and rainbow dust. You are being unfair to the person you love by having them stick around artificially with zero quality of life just so you can feel better about yourself.

Trust the science. Be fair. Be brave and make the right decision or eventually your disillusionment will cause something like this to happen.
 

IbukiLordSA

Member
I have a 3 year old son, and if he was in this state I would have let him go earlier. This is just cruel of the parents to do, very selfish thing for them to do but their isn't anything like the love you have for your child and it can be blinding at times.
 

Helznicht

Member
I have a daughter who was terminal at birth. I am glad the hospital laid out the risks for us and let us make the decision on if she should stay on life support during the first six weeks of her life (premature).

Risks given were:
50% survival chance
Unknown duration of treatment (she was in the hospital for 3 months before home)
High risk of some form of brain damage
Vision impairment up to potential blindness
Multiple blood transfusions likely required (2 at that time, was a total of 5)
We were warned no heavy touching/petting due to skin was too new and may be painful to her.

At what percentage and how long do you try before you decide to remove support? Who should get to decide and when is the question? If the hospital, the tone in their voice tells me it would have been a different choice for my daughter.

By the way she is 17 now, senior in highschool, ROTC, Volleyball, Honor Roll, just started her first job. She has a mild case of Cerebral Palsy and wears strong glasses.

If she had the ability to choose at birth, she would have likely pulled out, because it was clear she was suffering. Not sure she would agree with that now.
 
I have a daughter who was terminal at birth. I am glad the hospital laid out the risks for us and let us make the decision on if she should stay on life support during the first six weeks of her life (premature).

Risks given were:
50% survival chance
Unknown duration of treatment (she was in the hospital for 3 months before home)
High risk of some form of brain damage
Vision impairment up to potential blindness
Multiple blood transfusions likely required (2 at that time, was a total of 5)
We were warned no heavy touching/petting due to skin was too new and may be painful to her.

At what percentage and how long do you try before you decide to remove support? Who should get to decide and when is the question? If the hospital, the tone in their voice tells me it would have been a different choice for my daughter.

By the way she is 17 now, senior in highschool, ROTC, Volleyball, Honor Roll, just started her first job. She has a mild case of Cerebral Palsy and wears strong glasses.

If she had the ability to choose at birth, she would have likely pulled out, because it was clear she was suffering. Not sure she would agree with that now.

But the child in this case was already brain dead and paralyzed to the point of no return. Your daughter had a risk of such a fate. This child was already past that and already suffered from them.

Glad your daughter pulled through, but the situation you were in was very different from the one these parents are in, now, and the difference is substantial.
 

poppabk

Cheeks Spread for Digital Only Future
I have a daughter who was terminal at birth. I am glad the hospital laid out the risks for us and let us make the decision on if she should stay on life support during the first six weeks of her life (premature).

Risks given were:
50% survival chance
Unknown duration of treatment (she was in the hospital for 3 months before home)
High risk of some form of brain damage
Vision impairment up to potential blindness
Multiple blood transfusions likely required (2 at that time, was a total of 5)
We were warned no heavy touching/petting due to skin was too new and may be painful to her.

At what percentage and how long do you try before you decide to remove support? Who should get to decide and when is the question? If the hospital, the tone in their voice tells me it would have been a different choice for my daughter.

By the way she is 17 now, senior in highschool, ROTC, Volleyball, Honor Roll, just started her first job. She has a mild case of Cerebral Palsy and wears strong glasses.

If she had the ability to choose at birth, she would have likely pulled out, because it was clear she was suffering. Not sure she would agree with that now.
And that is why ultimately a court decides when the doctors and guardians disagree. It also generally works this way even if they are in agreement although newborns are a special case.
 

Beefy

Member
I get why the parents want to carry on fighting, but I also get why the court decided what it did. Maybe taking this sad decision out of the parents hands will help them deal with it better? Such a sad story tho.
 

Rahvar

Member
I sympathize with both sides but feel it was probably the right decision.

To those of you who insist on these things being up to the parents. As far as legal precendent goes, what difference is there between this and a court prohibiting parents from forcing a child-marriage or labour?
 

Alexlf

Member
People NEED to realize. EVEN if the experimental treatment works (and it almost certainly won't) the child ALREADY HAS IRREVERSIBLE AND CRIPPLING BRAIN DAMAGE . It will never ever eat, breath, see or move on it's own, even on the extremely EXTREMELY low chance of the experimental treatment working. And more than likely the treatment will just cause even more pain and suffering.
 

Izuna

Banned
I've heard first-hand experience about something related to this. Sadly this is the limit of the NHS.

People NEED to realize. EVEN if the experimental treatment works (and it almost certainly won't) the child ALREADY HAS IRREVERSIBLE AND CRIPPLING BRAIN DAMAGE . It will never ever eat, breath, see or move on it's own, even if the extremely EXTREMELY low chance of ther experimental treatment working. And more than likely the treatment will just cause even more pain and suffering.

I don't see your tag saying "Debbie Downer"
 

Alexlf

Member
I've heard first-hand experience about something related to this. Sadly this is the limit of the NHS.



I don't see your tag saying "Debbie Downer"

I mean, I don't intend to be such a downer, but people are arguing for allowing the treatment without realizing it ultimately won't change the kid's fate and will just cause more suffering, in addition to taking a large amount of the parents money.
 

Measley

Junior Member
I have a 3 year old daughter. I'm thankful that she came out in good health, and has been healthy so far in her short life. Couldn't imagine something happening where my wife and I would need to decide to let her die. That's a level of pain I hopefully never have to experience. My heart goes out to those parents because losing a child (even one that has been sick for a long time) has got to be an awful thing to go through.
 

ahoyhoy

Unconfirmed Member
You're crazy. There are far worse things than death.

And more so, the child is essentially dead already. It's effectively a mass of cells that need to wholly depend on others to survive. There is virtually no chance it will ever resemble what we think of as a human.

I don't consider it a "mercy" because we have no idea what's going on in the little bit of activity the brain has left, but there's certainly no reason to think you're saving what's already dead by keeping these cells alive.
 

diablos991

Can’t stump the diablos
Holy hell that story is depressing.
I completely understand the parents' decision and understand the ruling.

It's hard to express how bad I feel for the parents, the baby, and the judge that had to rule on this.

Kids change things. Something changes when you are having a child and this situation must have been torturous for all involved. :(
 
In the US they would yank life support as well unless they could find another hospital willing to keep on life suppor. And are people really expecting the court to change and let the parents go and inject their kid with some potentially even more painful treatment. This isn't a movie
 
Guys, there's an experimental treatment in the US that the parents have the money for. The government is not only yanking life support, but preventing the parents from taking their own child to the US for further help.

That's heinous and terrifying.

While it could theoretically help with the underlying condition, it would do nothing to reverse the structural brain damage that has occurred; so while it could keep him alive, it would do nothing to improve his quality of life.

Pro Choice unless the courts decide, then meh, probably in the best interests of the kid.

Not even remotely the same thing.
 

velociraptor

Junior Member
Any kid with a terminally ill or physically disabling illness should be allowed to peacefully die.

It's cruel to prolong someone's suffering for your own selfish desires.
 

C4Lukins

Junior Member
While it could theoretically help with the underlying condition, it would do nothing to reverse the structural brain damage that has occurred; so while it could keep him alive, it would do nothing to improve his quality of life.



Not even remotely the same thing.

Yeah this is a fully born child.
 

HardRojo

Member
Gotta side with the court ruling here. It's a very unfortunate situation for the parents and who wouldn't want to be with their children for as long as you could, but what that baby is going through right now can't certainly be called living, it's torture.
 

Budi

Member
Because there is nothing, ever, on this earth more painful than losing your child.

If you were a parent you would understand, I don't agree with their choice, he was hurting and they had to let go.

But the idea of letting your child die is worse than your own death, it's hell.

This will haunt both of them for the rest of their lives, I feel immense sympathy for them.
Yeah this is true.

This is a horrible situation all around. I don't think I have the correct answer to this or even right to say what should be done. I can only feel sympathy for the parents and the kid. It's possible that letting the kid go is the best option, even when it's against the parents wishes. I'm just relieved I don't have to be in a situation like this, as a parent or as someone who has to choose and force this.
 
Yeah this is a fully born child.

On the off chance you're not just being willfully obtuse, the child is basically being kept alive by machines, with zero hope of that ever not being the case. Do you really want to drag out it's suffering so you can score a few political points?

That's not pro-life, that pro-suffering.
 

gaiages

Banned
As the father of two 6 month olds I would never let go. Death is the ultimate enemy that must be conquered by any and all means.

So you'd theoretically let another human being live in a brain dead/vegetative state simply because you think that death (which is inevitable) is worse than just being a suffering entity without any agency?

That's... really terrible, man.
 

C4Lukins

Junior Member
On the off chance you're not just being willfully obtuse, the child is basically being kept alive by machines, with zero hope of that ever not being the case. Do you really want to drag out it's suffering so you can score a few political points?

That's not pro-life, that pro-suffering.


The parents still have hope and have been convinced by another doctor that an experimental treatment can help their child. Now not to dismiss the current doctor as a hack, in all likelihood he has the best interest of his patient in mind. But would you really leave such a decision to the courts, when the parents still want to fight for their child's life? If you had a heart condition, and your doctor said it was hopeless, but another doctor disagreed, would you give up? It is insane to deny available treatment to a human based on a doctors reccomendation, especially when the alternative is death.
 

Grug

Member
99 percent of the people expressing sympathy and understanding for the parents are still acknowledging the court order is correct.

They're just saying ease off on the "Selfish idiots torturing their kid! Listen to the experts morons!" type rants.

I am pro-science and evidence all the way, but fuck me what a horrible decision to have to make regardless of how clear the evidence is. Easy for us to be rational and clinical about it when we are so far removed from the situation itself. I can't possibly comprehend the depths of their grief and desperation.

For a board that skews very liberal, there is still a surprising lack of empathy around here at times. And before someone twists my words, empathy doesn't mean agreeing with their decisions, it's merely understanding the feelings and emotions that shaped the decisions. Going to watch my little fella sleep for a while now. :/
 

holygeesus

Banned
Guys, there's an experimental treatment in the US that the parents have the money for. The government is not only yanking life support, but preventing the parents from taking their own child to the US for further help.

That's heinous and terrifying.

I'm curious as to why you would be suspicious of the government in this story? Great Ormond street doctors are also recommending no further treatment, and again, I can't see why they would doom the poor child out of spite, especially when it is the parent's money.

What I *don't* understand about this whole case, is why the parents have been refused permission to take the child home to die there. That seems especially cruel at this point.
 

Maledict

Member
The parents still have hope and have been convinced by another doctor that an experimental treatment can help their child. Now not to dismiss the current doctor as a hack, in all likelihood he has the best interest of his patient in mind. But would you really leave such a decision to the courts, when the parents still want to fight for their child's life? If you had a heart condition, and your doctor said it was hopeless, but another doctor disagreed, would you give up? It is insane to deny available treatment to a human based on a doctors reccomendation, especially when the alternative is death.

The other doctor, the one offering this treatment, testified in court in this case that his treatment would not cure the child or reverse the damage, and at best would provide a few extra months of life. In pain and suffering.

Do you not think that the staff at St Ormonds, one of the most renowned and specialist children's hospitals in the world, would be looking at this if it were an actual option?
 

Famassu

Member
The parents still have hope and have been convinced by another doctor that an experimental treatment can help their child. Now not to dismiss the current doctor as a hack, in all likelihood he has the best interest of his patient in mind. But would you really leave such a decision to the courts, when the parents still want to fight for their child's life? If you had a heart condition, and your doctor said it was hopeless, but another doctor disagreed, would you give up? It is insane to deny available treatment to a human based on a doctors reccomendation, especially when the alternative is death.
The child has suffered severe brain damage. There is no return from that. Anything that might help with the genetic disease won't reverse that brain damage and the child would still be left connected to a machine to keep him alive, trapped in that state and probably still die in a few months time even if the treatment helps. That's not life.
 

C4Lukins

Junior Member
The other doctor, the one offering this treatment, testified in court in this case that his treatment would not cure the child or reverse the damage, and at best would provide a few extra months of life. In pain and suffering.

Do you not think that the staff at St Ormonds, one of the most renowned and specialist children's hospitals in the world, would be looking at this if it were an actual option?

My whole argument is that it should be up to the parents. Even if it is hopeless. Denying available treatment when the parents are still fighting for their child's life is wrong IMO. I am not defending the parents decision so much as I am condemning the courts for making the decision for them.
 
The parents still have hope and have been convinced by another doctor that an experimental treatment can help their child. Now not to dismiss the current doctor as a hack, in all likelihood he has the best interest of his patient in mind. But would you really leave such a decision to the courts, when the parents still want to fight for their child's life? If you had a heart condition, and your doctor said it was hopeless, but another doctor disagreed, would you give up? It is insane to deny available treatment to a human based on a doctors reccomendation, especially when the alternative is death.

You're missing some details:

The other doctor, the one offering this treatment, testified in court in this case that his treatment would not cure the child or reverse the damage, and at best would provide a few extra months of life. In pain and suffering.

Do you not think that the staff at St Ormonds, one of the most renowned and specialist children's hospitals in the world, would be looking at this if it were an actual option?

The child has suffered severe brain damage. There is no return from that. Anything that might help with the genetic disease won't reverse that brain damage and the child would still be left connected to a machine to keep him alive, trapped in that state. That's not life.

That hope is misplaced. The scenario you're presenting isn't relevant. If there was a chance of a cure and a reversal of the damage done, yes, take every chance. But this isn't that.
 
Came into this thread expecting support for a government denying parents a last-ditch chance to save their child's life. Never change, GAF.

Please change, GAF.

If you had any inkling of medical knowledge and actually read the OP you would know that the last-ditch efforts failed.

Never change, GAF indeed.

This is objectively the right call to make.
 

Maledict

Member
My whole argument is that it should be up to the parents. Even if it is hopeless. Denying available treatment when the parents are still fighting for their child's life is wrong IMO. I am not defending the parents decision so much as I am condemning the courts for making the decision for them.

Why would you think it should be up to the parents?

Parents don't own a child. If parents abuse a child, the state steps I . If parents mistreat a child, the state steps in. Motives don't come into it either - if I beat my child with sticks because doing so will make god love them and guarantee them a place in heaven that doesn't matter one bit. Mistreatment is mistreatment, and in this case the child is suffering, has permanent damage, and the treatment will only prolong that suffering and will not improve the child's condition or abilities at all.

Look, the parents are in an appalling situation. It is heartbreaking. I can't say I wouldn't do the same in their situation. But that's why their are court systems and medical professionals in place for this. Because ultimately right now what they are doing is trying to argue they have the right to inflict unnecessary pain on a child that (everyone agrees) will unfortunately and tragically die in a few months even if they have the treatment (and survive the journey).

I again say, the staff at St Ormond st feel this is the best cause. It's not one doctor, it's the entire professional staff at literally one of the best and most specialist children's hospitals in the world. It's horrible this has to be done, and I hope some day the parents heal and recover from this, but it's the right decision. Let Charlie stop suffering and go to his rest.
 

Famassu

Member
My whole argument is that it should be up to the parents. Even if it is hopeless. Denying available treatment when the parents are still fighting for their child's life is wrong IMO. I am not defending the parents decision so much as I am condemning the courts for making the decision for them.
When parents act irrationally, prolonging something inevidable, no, it shouldn't be left to the parents. It'd be maybe different if the child had some level of activity & could interact with the parents, but the child is pretty close to being a vegetable. Parents don't always know what's best for their children and can do harm to them, that's why the courts/society can make not-always-the-nicest decisions for them. When all evidence points out that nothing would actually improve the child's overall state, just (at best) make him suffer a bit longer, I think the court should be able to make the decision for the parents, as horrible as it is for them to lose a child.

I've had relatives who've had immobilating diseases, living connected to machines & confined to beds, who couldn't end their own lives (through eutanasia) even if they wanted for it to just end. Having seen that even adult people don't want to stick around in these kind of situations, I don't think we should put children who can't decide for themselves through that just for fool's hope & wanting to cling on to the kind of "life" that this child has.
 

Akronis

Member
And more so, the child is essentially dead already. It's effectively a mass of cells that need to wholly depend on others to survive. There is virtually no chance it will ever resemble what we think of as a human.

I don't consider it a "mercy" because we have no idea what's going on in the little bit of activity the brain has left, but there's certainly no reason to think you're saving what's already dead by keeping these cells alive.

This is the unfortunate truth that I wanted to avoid because I imagine it would ruffle too many feathers.
 

C4Lukins

Junior Member
Why would you think it should be up to the parents?

Parents don't own a child. If parents abuse a child, the state steps I . If parents mistreat a child, the state steps in. Motives don't come into it either - if I beat my child with sticks because doing so will make god love them and guarantee them a place in heaven that doesn't matter one bit. Mistreatment is mistreatment, and in this case the child is suffering, has permanent damage, and the treatment will only prolong that suffering and will not improve the child's condition or abilities at all.

Look, the parents are in an appalling situation. It is heartbreaking. I can't say I wouldn't do the same in their situation. But that's why their are court systems and medical professionals in place for this. Because ultimately right now what they are doing is trying to argue they have the right to inflict unnecessary pain on a child that (everyone agrees) will unfortunately and tragically die in a few months even if they have the treatment (and survive the journey).

I again say, the staff at St Ormond st feel this is the best cause. It's not one doctor, it's the entire professional staff at literally one of the best and most specialist children's hospitals in the world. It's horrible this has to be done, and I hope some day the parents heal and recover from this, but it's the right decision. Let Charlie stop suffering and go to his rest.

Honestly I do not have the energy to continue to debate this. I understand where you are coming from, and logically many of your points are sound. On an emotional level, I think we are not going to see eye to eye on this, and it is a super beat down to continue saying the same thing in different ways.
 

Famassu

Member
Honestly I do not have the energy to continue to debate this. I understand where you are coming from, and logically many of your points are sound. On an emotional level, I think we are not going to see eye to eye on this, and it is a super beat down to continue saying the same thing in different ways.
And that's exactly why courts should, when needed, have the power to decide over things like these. Emotions make for bad decision making, particularly in cases like these.
 

greepoman

Member
I have a daughter who was terminal at birth. I am glad the hospital laid out the risks for us and let us make the decision on if she should stay on life support during the first six weeks of her life (premature).

Risks given were:
50% survival chance
Unknown duration of treatment (she was in the hospital for 3 months before home)
High risk of some form of brain damage
Vision impairment up to potential blindness
Multiple blood transfusions likely required (2 at that time, was a total of 5)
We were warned no heavy touching/petting due to skin was too new and may be painful to her.

At what percentage and how long do you try before you decide to remove support? Who should get to decide and when is the question? If the hospital, the tone in their voice tells me it would have been a different choice for my daughter.

By the way she is 17 now, senior in highschool, ROTC, Volleyball, Honor Roll, just started her first job. She has a mild case of Cerebral Palsy and wears strong glasses.

If she had the ability to choose at birth, she would have likely pulled out, because it was clear she was suffering. Not sure she would agree with that now.

You have to be careful reading into doctors intentions on tone. To me it seems the doctor gave you completely accurate information.

I have a doctor friend who struggles with this and has both been accused of either providing false hope or not enough. The truth is neither she was just trying to relay information. She's found that saying 50% chance a lot of times people take it as "doctor told me I was gonna die" when any doctor would take a 50% chance of saving someone and those are good odds compared to.a lot of patients.
 

Famassu

Member
I have a daughter who was terminal at birth. I am glad the hospital laid out the risks for us and let us make the decision on if she should stay on life support during the first six weeks of her life (premature).

Risks given were:
50% survival chance
Unknown duration of treatment (she was in the hospital for 3 months before home)
High risk of some form of brain damage
Vision impairment up to potential blindness
Multiple blood transfusions likely required (2 at that time, was a total of 5)
We were warned no heavy touching/petting due to skin was too new and may be painful to her.

At what percentage and how long do you try before you decide to remove support? Who should get to decide and when is the question? If the hospital, the tone in their voice tells me it would have been a different choice for my daughter.

By the way she is 17 now, senior in highschool, ROTC, Volleyball, Honor Roll, just started her first job. She has a mild case of Cerebral Palsy and wears strong glasses.

If she had the ability to choose at birth, she would have likely pulled out, because it was clear she was suffering. Not sure she would agree with that now.
Your case is nothing like this. High risks but also the potential for a more or less healthy life if it succeeds, which it luckily did, for your daughter. This has zero chances on anything but prolonging a vegetable state condition for a few months (by the words of the doctor who would have given the treatment) that has no hope of a cure. This child wouldn't have become the valedictorian of his class nor a world champion basketball player, even in the bestest of bestest cases.
 

Keio

For a Finer World
Because there is nothing, ever, on this earth more painful than losing your child.

If you were a parent you would understand, I don't agree with their choice, he was hurting and they had to let go.

But the idea of letting your child die is worse than your own death, it's hell.

This will haunt both of them for the rest of their lives, I feel immense sympathy for them.
I've buried a daughter, but if it came down to having her continue as a brain stuck in a husk or have her pass away, I'd choose the latter in a heartbeat. Yes, her death will always be a part of my life but I would never have doomed her to an existence that would never resemble human life.
 
Any kid with a terminally ill or physically disabling illness should be allowed to peacefully die.

It's cruel to prolong someone's suffering for your own selfish desires.

I don't believe this was your intent but I have to clarify...

Are you saying disabled people should not be treated and should instead be "allowed" to die? That is a disgusting opinion that I know people harbor but I am shocked someone would flat out say that on here.

For myself, I am the parent of a severely developmentally disabled and blind 10 year old child. I will say honestly that I have wondered often whether or not he should be alive. I am certain that he wouldn't be alive today without the medications that he needs on a daily basis. In the natural world without modern advances he would certainly be dead. He is also autistic and unable to communicate his needs and has regular meltdowns and outbursts. It breaks my heart when I really sit down and think about if these meltdowns are behavioral or caused by some pain or discomfort he feels but can't express.

Then there are the smiles and clear instances where we do make a connection. When he hears my voice for the first time when I get home from work and see his sheepish grin. When we cuddle and make animal noises together or just random goofy sounds and he giggles and laughs and is so happy in the moment I know that he deserves to have as many of these moments as he can while he is here on earth.

To know that there are people that think he should be dead because all they see is a drain on "resources" and is not a "productive" member of society makes me so angry. Life is absolutely a rare and special phenomenon. When you look beyond our lives and world you see the universe is basically the opposite of life. It is absolutely crushing and magnificent at the same time. The fact that we (and all life on our planet) exist within the vacuum of space that destroys life without mercy is absolutely amazing to me and really indicates how precious life is. We fight to survive each and every day in a space that just wants to suck the life out of us. Yet some of you act as if life is nothing worth fighting for.

That said I also think the right choice is being made here even though I would probably be just like the parents in question if the time ever comes for my son.
 
Your case is nothing like this. High risks but also the potential for a more or less healthy life if it succeeds, which it luckily did, for your daughter. This has zero chances on anything but prolonging a vegetable state condition for a few months (by the words of the doctor who would have given the treatment) that has no hope of a cure. This child wouldn't have become the valedictorian of his class nor a world champion basketball player, even in the bestest of bestest cases.

Yeah, I think a lot of people don't realise that the proposed medicine wasn't a cure, it was merely a way of prolonging the kids life a bit. But that life is basically horrible and full of pain. It's terrible for the parents and I don't blame them for taking it this far, but the court's there to look out for the kid because the parents are too invested to, and they've done what they're meant to in this case I think.
 
Ya, that reminded me also I definitely need to do a DNR sometime soon in case I am in a sudden accident, and people around me want to prolong my pain because they cant say goodbye.

It's extremely important to do this.

DNR, put someone that you trust your life with as your medical proxy, etc.
Don't leave stuff like that to chance.
 

olore

Member
At some point these parents need to accept their kid is never going to be better. I'll even argue the kid is already dead from a standpoint considering he can't even do vital actions like breathing by himself.

You're not the parent of a child I'm willing to put money on. Life isn't as simple as 1 plus 1 is 2

Children changes everything. I have three myself. 2, 4 and 6.
 
I've been following this since it started, I think that the right decision has been made.

I'm pissed off at certain newspapers and his family for whipping their supporters into a frenzy, several of the GOSH staff members who are working with his family have been named online in the hope that they'll be attacked.
 
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