13/11/20 – The Case of Charlie Gard

We’re currently at $1,376. This is now the 13th day of the challenge. I can say, happily, that it’s improved my life. It is a bit of a melt because it’s just another thing you have to do that day but that was the whole point of the project anyway. We should be thankful that all we have to do is write 1,000 words and none of us even write them, we type them. Better than walking half an hour there and back for dirty water. No complaints from me today, life is good, I’m healthy, motivated and ready to fill the fuck out of this word count so I can crawl into bed.I woke up in a class mood this morning. I’ve been waiting for Friday so I can get a proper lie-in and also so I can literally just chill.

Well, it’s now half 11 and I’ve nothing written for my blog so I’m having to spill all of my thoughts onto a page to try and fill a 1,000 word quota.Ok, today was Friday the 13th for the second time in 2020 and I really didn’t fancy having a shit day so i just decided I’d be in a good mood today. I started off by singing ‘Oh What A Beautiful Morning’ from the musical Oklahoma. I actually have got a bit of a talent for this particular song, believe it or not. Yeah, after that nothing was going to kill my vibe today.

Alright, that’s that line of thought exhausted, onto the next one. My girlfriend, Katie, fucking loves Coronation Street which is what she’s watching right now. At the moment there’s a feature story about Steve, Leanne and their kid, Oliver. He’s currently in an induced coma because he is suffering from mitochondrial disease which leads to brain damage and muscle degeneration. Anyway, that’s not even the point of the storyline, it’s that the hospital doesn’t believe the child can be saved and should be taken off life support whereas Leanne is still holding onto the hope that a cure could be discovered. Obviously the whole plot is very emotional but I’ve just been dropping in and out as Katie’s been watching Corrie in the background. So, the parents appealed the judgement by the Health Trust and lost. This happened in real life a few years ago with a child named Charlie Gard. He was 8 months old and suffered from the same disease as Oliver does in the show. His parents wanted to take him to the US to try an untested treatment for the disease but the NHS believed there was nothing more to be done and offered to move Charlie towards a regime of palliative care. His parents took Great Ormond Street Hospital to court for the right to take the child to the US but they lost the ruling. A GoFundMe page raised £1.2m for the parents to fight the case and it cost the taxpayer £500,000 in legal fees. I think it is worth stating that this disease affected 16 children worldwide at the time of the ruling in 2017.

Now, I say this as somebody who hasn’t got children and therefore doesn’t know that type of love yet, but I honestly don’t think I’d pursue a court case with the best hospital in the country to argue that all the medical experts in the whole of the UK are wrong. That said, this trip to the US that the parents of Charlie wanted to take was on the back of a conversation they’d had with one doctor from there, he told them that this particular type of treatment could, ‘in scientific theory’, help the child. After this American doc, as they call them, read Charlie’s file however, he decided that it was very unlikely that his state would improve. The thing about this disease is that it causes brain damage and brain damage can’t be cured, once your brain cells die they never regenerate. A medical expert in the UK was also basically saying that American doctors don’t really care about success rate and would be willing to do anything provided the funding was there – money grabbers. This one doctor in the US gave these poor parents false hope that he could help the child when he knew he couldn’t, he did so with every intention of getting his hands on some of that £1.2m and in the process cost the taxpayers £500,000. I’m sorry, but to me, this is so messed up. It’s important to emphasise that this doctor, who I can’t find the name of, only admitted it was unlikely after he was pressed by UK authorities on his claims. There is literally no evidence at all that mitochondrial disease can be cured, never has been and unlikely to be anytime soon. We can thank this Yankee doc that he was there to provide disappointment to the parents of Charlie. I don’t blame them for a second for going to court over the decision, it’s their child, what else are they going to do? However, in the media it was a very 50/50 affair with people taking pretty staunch views from both sides. I think, if it’s not your child you’ll probably say you wouldn’t go to court and yet, if you found yourself in that situation you would definitely do absolutely everything in your power to save your baby. It’s heartbreaking but I really take issue with this prick from America, who did he think he was? What possessed him to play with the lives of two people who are trying to come to terms with the fact that their baby is extremely likely to die, you couldn’t even do the maths on how likely Charlie Gard was to survive but unfortunately on the 28th July 2017 Charlie passed away.

This isn’t the only case in recent years in the UK of a hospital being brought to court over treatment of a baby with a degenerative disease. Alfie Evans, from Liverpool, was born with a degenerative brain disorder which meant he was born in a vegetative state already. Pretty tragic case but the hospital decided that keeping the child on a ventilator wasn’t humane. Italian doctors offered to transport the child to Italy to be kept alive in his vegetative state but the parents weren’t allowed to transport Alfie because it was unlikely he would survive the trip. The parents lost the case in court and consequent appeals. Alfie died in Liverpool on 28th April 2018.

Sorry if it was depressing, I hope you found that as interesting as I did. I love a topic like this where it’s so difficult to even comprehend the situation, nevermind come to a stance on it. I’ll be back tomorrow for the ending of week 2 baby!

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