From the statement that Charlie Gard’s mother made to the court, in which the boy’s parents formally gave up their fight to take him to the US for experimental treatment:
Put simply, this is about a sweet, gorgeous, innocent little boy who was born with a rare disease, who had a real, genuine chance at life and a family who love him so very dearly and that’s why we fought so hard for him.
We are truly devastated to say that following the most recent MRI scan of Charlie’s muscles, as requested in the recent MDT meeting by Dr Hirano; as Charlie’s devoted and loving parents we have decided that it’s no longer in Charlie’s best interests to pursue treatment and we will let our son go and be with the angels.
The American and Italian team were still willing to treat Charlie after seeing both his recent brain MRI and EEG performed last week. He’s not brain dead (and never has been). He still responds to us, even now, but after reviewing the recent muscle MRI it was considered that Charlie’s muscles have deteriorated to the extent that it is largely irreversible and, were treatment to work, his quality of life would now not be one which we would want for our precious little boy. They both agreed that treatment should have been started sooner.
There is one simple reason for Charlie’s muscles deteriorating to the extent they are in now – TIME. A whole lot of wasted time. Had Charlie been given the treatment sooner he would have had the potential to be a normal, healthy little boy.
His muscles were in pretty good shape in January, although obviously weaker than a child of similar age, and his brain scan was that of a relatively normal child of his age. He may well have had some disabilities later on in life but his quality of life could have been improved greatly.
The reason that treatment was not commenced in January or April this year was that Charlie was found to have ‘irreversible brain damage’ and treatment was considered as ‘futile’. Dr Hirano and [another doctor], together with other internationally renowned paediatric neurologists have now reviewed Charlie’s MRI’s and EEG’s which were performed in January and April respectively and they have confirmed that these MRI’s and EEG’s showed NO actual evidence of irreversible brain damage.
It’s an outrageous situation. It is possible that the Gard family was wrong about how treatable Charlie was. But here’s the thing: it wouldn’t have cost the UK government a penny to allow the child to go abroad for treatment. The Gards had raised the money themselves.
It is terrifying to face the fact that the British state will not allow the parents of a child to whom doctors have given no hope of survival to take that child overseas at their own expense for medical treatment that just might save his life. The Gard-Yates family weren’t proposing to take Charlie to a Mexican fly-by-night clinic to have him dosed with laetrile. It was to be in a New York hospital, overseen by a Columbia University neurologist. Why does the state have more rights over a dying baby than the baby’s mother and father?
Here is the FAQ from the Great Ormond Street Hospital. It says that under British law, the courts have the ultimate responsibility for determining what’s in a child’s best interest, not the parents. I find this difficult to accept in this case, given that the family could have afforded treatment. If I understand the case correctly, the UK medical authorities decided that Charlie would not have enjoyed a sufficient “quality of life,” even if the treatment saved his life (nobody ever claimed that the treatment could cure him). Who decides what “quality of life” means?
Charlie Gard’s parents have privately expressed their concern after discovering that the lawyer appointed to represent their 11-month-old son in court heads a charity that backs assisted dying.
Victoria Butler-Cole, who speaks on Charlie’s behalf in court, is chairman of Compassion in Dying, a sister organisation to Dignity in Dying which campaigns for a change in the law to make assisted dying legal in the UK. Dignity in Dying used to be called the Voluntary Euthanasia Society.
The two charities share the same chief executive and media team and trustees – such as Mrs Butler-Cole – can only sit on one charity if they support the aims of the other. Mrs Butler-Cole was appointed to the role by the publicly-funded state body Cafcass which acts in the best interests of children in court cases.
Of all the lawyers in Great Britain who could have been appointed to represent the interests of Charlie Gard in court, the state just happened to choose one who runs a euthanasia charity. Funny how that worked out, innit?