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Old 07-29-2017, 12:31 PM
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The doctors - the only people with the knowledge to make this decision - should make this decision. Keeping Charlie 'alive' - and when I say alive, I mean artificially ventilated - to use him as a guinea pig in a trial which has not even been tested on MICE with this same condition, is absolutely not in his best interests.

Let me give you a slightly better explanation - which, again, people would know if they read the court order. Charlie has a disease which, at present, has had only 16 cases worldwide. Sadly, all have been fatal. 'There is a treatment' is false. RRM2B (The strain of Mitochondrial DNA depletion disease Charlie had) has never been treated, much less cured. The 'treatment' offered had not even been tested on MICE with this condition - let alone a baby a few months old who is capable of feeling pain.

On top of that - and of course, GOSH themselves looked into this treatment, fully intending to do everything for Charlie - the damage that Charlie had already suffered due to seizures - back in December and January meant this treatment could not help. He had minimal brain function, unable to see, hear, or even open his eyes. The treatment can not reverse this damage. There is no scientific evidence this would have had any benefit to Charlie. A FACT the doctor himself admitted in court.

Now that I have the medical side out of the way, let's get to the legalities. Parental Rights do not exist in the UK. You have Parental Responsibilities. One of those responsibilities is to keep your child from harm. The Children Act 1989 states the childs welfare is paramount - not that of the parents. While parents can make most decisions in a healthcare capacity, even stupid ones such as not to vaccinate, they cannot make a decision in which there is a reasonable, even likely, possibility of the child coming to harm and causing undue pain and suffering.

Also, this was not a case of 'Government' making a decision. First, the judges in the UK are not chosen by the government, and, second, the decision was made by Charlies medical staff. Our judges are non-partisan, not elected, and do not answer to the government.

As for 'raising the money' - it was NEVER about the money. If this treatment had any reasonable chance of success, the NHS would have paid for it. GOSH themselves approached an ethics committee about nucleoside therapy before the full extent of additional seizures was known. The fact that this doctor was willing to take 1.2MILLION from the parents to use a sick baby as a guinea pig despite it not being in his best interests says all I need to know about 'private' healthcare.

'It was not physical abuse' is an opinion - one which medical staff and the judiciary disagree with. Subjecting Charlie to a potentially deadly, painful and damaging therapy for no gain is abuse.

Throughout all of this, I've felt terrible for Charlie's parents. They are wrong, but they don't have to be right. They're not medical professionals, they are doing what they think is right for their son. As a parent, you never want to 'give up' - and that's why decisions such as turning off life support are not theirs to make. As an ICU nurse, I've assisted in removal of life support. I've been there to comfort families, to explain the decision, and usually they agree. They don't want their family member in pain.

In Charlie's case - they disagreed. And that makes me angry. Not because they disagreed, but because they were given false hope, they were used as political pawns by the US Right. They were egged on by 'Charlies Army' who had no knowledge of the complexities involved, but instead used this sick baby to push their own agendas. Those people disgust me.

I recommend everyone who thinks GOSH was wrong to read the full judgement. I've seen so many incorrect statements used as fact in these debates because no one has bothered to ensure they are correct before getting on their high horse.
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