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Anorak | Charlie Gard: hope will always beat reason

Charlie Gard: hope will always beat reason

by | 13th, July 2017

charlie gard

 

If you get delve into the steaming heap of pleading, bias, fiscal nous, screeching, virtue-signalling, baby-kissing, dreaming, pining, narcissism, spiritual zeal, butchery and guff, at the root of society, you’ll find the whole point of governance: to support human life. You can consult the history books and thereby, say the knowledge wallahs, learn how not to repeat mistakes of the past. But most of us know what we want and where we need to go to get it. We want a good life. So how did it come to this? How did the parents of terminally-ill baby Charlie Gard end up fighting for their son’s existence in the High Court in London?

Charlie suffers from infantile onset encephalomyopathy mitochondrial DNA depletion syndrome (MDDS). He’s ill. Very ill. He cannot see, hear, move, cry or swallow. Everything he does is dictated by invasive machines. Science and electricity keep Charlie Gard alive.

And in technology, Charlie’s parents, Connie Yates and Chris Gard, have hope. They know of an experimental treatment that could prolong their son’s life. Doctors at Great Ormond Street Hospital (GSOH), where Charlie is on life-support, say they have explored many treatment options and none would improve Charlie’s quality of life and he should be allowed to die. Judges at the European Court of Human Rights ruled further treatment would “continue to cause Charlie significant harm”.

But that hope, the thing that makes us human and active lingers and nags. It drives Charlie’s parents on. They’ve raised £1.3m through donations to take their son to the US for an experimental treatment called nucleoside therapy. It’s untested. Not even mice have tried it. And it’s not being offered as a cure. Having seen the report on Charlie’s brain damage, the American doctor stated that he could “understand the opinion that [Charlie] is so severely affected by encephalopathy that any attempt at therapy would be futile. I agree that it is very unlikely that he will improve with that therapy.”

GSOH says Charlie should be allowed to die with dignity. Charlie is 11-months-old. Dignity is for the aged, the lived and the caring. Can an innocent die with anything but dignity? Can a child yet to make his first birthday have an undignified death? The adults are charge. They are keeping him alive and deciding the manner, time and, through language, the narrative of his death.

Medics will offer Charlie the utmost respect through a hard-fought death; but they will not offer him more life. They’ve blended hard-nosed, pragmatic, experienced views with statistics into a thick gunk, added some sweetness to mask the taste and handed it to Charlie’s parents. Give it to the lad. Swallow once and wait for the end. It’ll be ‘peaceful’.

But for everyone involved in this case – the living – it isn’t peaceful. Hurt by a seriously ill child with an inherited disease, the parents are cursed doubly with hope stymied by bureaucracy .“There is no love of life without despair of life,” wrote Albert Camus. Hope doesn’t mean denying the horror of their son’s appalling condition and appealing for the impossible. Hope is about remembering triumph.

So we give them money. We want the Gard family to prevail. And from the medics, one small boy’s life is now down to the lawyers. The case is now about the State’s reason and critical thinking versus emotion. We know hope won’t do it. It’s not enough. But the money might. The intrepid medics could help. Things are not certain. There is a miniscule chance of something incredible. And in that tiny space, we see a need to act. Hope, more muscular than mere optimism, is the trigger for action. Not to act on hope is to be complicit and complacent this side of the grave. Against cruel nature Charlie’s parents have a chance to influence the outcome.

You’d deny them that chance? I wouldn’t. I’d let them seize it. Things might not change for the better, but they can change.



Posted: 13th, July 2017 | In: Key Posts, News Comment | Follow the Comments on our RSS feed: RSS 2.0 | TrackBack | Permalink