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I guess my question would be - what kind of life for 6 years would this be for little Charlie assuming the best they can do is arrest the disease where it is (per the American doctor who initially offered help and now agrees that Charlie's condition is much worse than he was led to believe)?
Do YOU want to live for 6 years in a soundless, sighless, black hole where you cannot even move?
Do you?
Well, I appreciate you giving me a choice in the matter. Charlie (or his parents) doesn't even get that.
Weathermen can't predict the weather a week ahead half of the time - and they are the experts.
How are you or anyone else going to predict the future 6 years out?
Again - I posted about an infant that was given 2 months to live back in 2011... and is now 6 years old and has shown major improvement.
I know he won't be normal - but his parents want the choice to pursue further options on their own, and they can't even do that.
Your 6-year-old has nothing to do with this. Charlie's condition is not the same as the 6-year-old's. Charlie's brain damage is much more extensive. It's not a matter of being normal. It's an infant in constant pain, unable to move, unable to see, unable to hear, unable to cry out. That's Charlie's life. Doctors can tell you that Charlie is in pain. The AMERICAN doctor that the parents wanted to treat Charlie is telling you that the experimental treatment, which was experimental to begin with, won't work, and will prolong this baby's pain.
You just keep on ignoring that this baby is in pain, in a place without light, without hope. You want to prolong this baby's pain. For what possible reason?
Your 6-year-old has nothing to do with this. Charlie's condition is not the same as the 6-year-old's. Charlie's brain damage is much more extensive. It's not a matter of being normal. It's an infant in constant pain, unable to move, unable to see, unable to hear, unable to cry out. That's Charlie's life. Doctors can tell you that Charlie is in pain. The AMERICAN doctor that the parents wanted to treat Charlie is telling you that the experimental treatment, which was experimental to begin with, won't work, and will prolong this baby's pain.
You just keep on ignoring that this baby is in pain, in a place without light, without hope. You want to prolong this baby's pain. For what possible reason?
Oh... I bring forth a real life example, and you dismiss it. You say the condition is different... however, the situation is the same. Experts told them... 2 months to live. In the UK, he's dead. In the US, he is 6 years old and is gaining his bodily functions.
You say without hope. Charlie's parents say there is hope.
Let's be honest... you would agree with the freedom of the parents if they said pull the plug. I would not like the outcome, but I would acknowledge their freedom in how they would want to move forward.
Everybody is not the same. Just because you or I would not undertake a situation doesn't mean Charlie's parents would behave in a similar manner.
I fully believe the answer to this question is because Donald Trump made the offer. That is the one and only reason anyone here is arguing to prolong Charlie's suffering. The hell with the baby, they believe this will make their hero look good. I can honestly see no other reason why anyone would be arguing that an infant should be made to suffer so needlessly.
Puts things in perspective with the cult, doesn't it? It doesn't matter who suffers as long as Donald Trump gets a "win" in the process.
Actually that is not true.
I actually started the topic twice on different days before Trump got involved, and those threads were deleted without notice... probably because I put "death panel" in the title of the thread.
That's what the parents keep telling themselves. As their baby is in constant pain, but has no way to communicate that to them. They keep hoping for a miracle, and ignoring the experts. While their baby can only experience pain.
What's wrong with sending him to the US for experimental treatment? The only thing to lose is extending the suffering (assuming that's true), but what's there to gain is A. perhaps an improvement in his condition and worse case scenario B. more data for a cure.
If the parents are okay with this, there's ZERO reason how any court can override such a decision. Unless there's a death panel court which decides for you.
Oh... I bring forth a real life example, and you dismiss it. You say the condition is different... however, the situation is the same. Experts told them... 2 months to live. In the UK, he's dead. In the US, he is 6 years old and is gaining his bodily functions.
You say without hope. Charlie's parents say there is hope.
Let's be honest... you would agree with the freedom of the parents if they said pull the plug. I would not like the outcome, but I would acknowledge their freedom in how they would want to move forward.
Everybody is not the same. Just because you or I would not undertake a situation doesn't mean Charlie's parents would behave in a similar manner.
The situation can't be the same BECAUSE the conditions are different.
Charlie's parents say there is hope...based on nothing. The brain damage is too massive. EVERY doctor agrees. Read the court documents. The brain damage is too massive.
What's wrong with sending him to the US for experimental treatment? The only thing to lose is extending the suffering (assuming that's true), but what's there to gain is A. perhaps an improvement in his condition and worse case scenario B. more data for a cure.
If the parents are okay with this, there's ZERO reason how any court can override such a decision. Unless there's a death panel court which decides for you.
This baby is in pain. That's what's wrong with sending him to the US for experimental treatment. He's in pain. He's trapped. He can't see. He can't hear. He can't move. He can't move at all. His entire existence is pain.
I doubt that the American doctor would administer the experimental treatment at this point. That doctor has concurred that the treatment won't help. So, neither of your "gain" scenarios are at play here.
This baby is in pain. That's what's wrong with sending him to the US for experimental treatment. He's in pain. He's trapped. He can't see. He can't hear. He can't move. He can't move at all. His entire existence is pain.
I doubt that the American doctor would administer the experimental treatment at this point. That doctor has concurred that the treatment won't help. So, neither of your "gain" scenarios are at play here.
Making such decisions is not easy, it's upsetting for the medical team at GOSH and everyone involved but they have made their decision on what they firmly believe is best for Charlie.
Quote:
Originally Posted by GOSH
What is his condition?
Charlie’s condition is exceptionally rare. He suffers from an inherited mitochondrial disease called infantile onset encephalomyopathic mitochondrial DNA depletion syndrome, referred to generally as “MDDS”. Charlie suffers specifically from the RRM2B mutation of MDDS.
Charlie’s brain, muscle and ability to breathe are all severely affected. In addition, Charlie has congenital deafness and a severe epilepsy disorder. Charlie's heart, liver and kidneys are also affected.
Charlie has severe progressive muscle weakness and cannot move his arms or legs or breathe unaided.
Charlie's eyelids cannot stay open and his eyes point in different directions because of muscular weakness. Charlie’s retina would struggle to develop and his brainwaves suggest that he is not going to be able to lay down normal visual patterns that should be learned at an early age. Eyesight is not something you’re born with, it develops over time.
Why is there no treatment available at GOSH?
There is no cure for Charlie’s condition which is terminal. GOSH explored various treatment options, including nucleoside therapy, the experimental treatment that one hospital in the US has agreed to offer now that the parents have the funds to cover the cost of such treatment. GOSH concluded that the experimental treatment, which is not designed to be curative, would not improve Charlie’s quality of life.
How did GOSH come to this decision about his treatment?
GOSH’s clinicians had to balance whether this experimental treatment was in his best interests or not.
One of the factors that influenced this decision was that Charlie’s brain was shown to be extensively damaged at a cellular level. The clinician in the US who is offering the treatment agrees that the experimental treatment will not reverse the brain damage that has already occurred.
The entire highly experienced UK team, all those who provided second opinions and the consultant instructed by the parents all agreed that further treatment would be futile – meaning it would be pointless or of no effective benefit.
Last edited by Brave New World; 07-06-2017 at 11:05 AM..
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