Hope and the agony of little Charlie’s parents

One can only imagine the agony of the parents of Charlie Gard, Chris and Connie.

Their baby son has a mitochondrial disease which saps energy from his organs and muscles and has left him blind, deaf, with little brain function and unable to breathe without a ventilator.

His lungs will never work properly and his prognosis is not good. Charlie is a tiny scrap of humanity, eight months old but barely alive.

Doctors at Great Ormond Street Hospital say there is no cure, and believe it would be kinder to switch off the ventilator and let him die peacefully.

His parents have other ideas. They have found a U.S. doctor willing to treat Charlie, although there are no promises. eighty-thousand people, including a great number of Mail readers, have raised £1.2million to cover the costs of taking him to America for the treatment.

The case is now in the High Court, as doctors and parents battle over what is right for him. The UK doctors have been accused of harshness, by describing Charlie’s parents in emails as the ‘spanner in the works’ and that they are ‘holding up’ proceedings.

Perhaps their language could have been more temperate. Yet I think the bigger crime is to foster hope where there is none, or little.

To encourage parents to travel thousands of miles and spend a huge sum they haven’t got in the hunt for a cure that may not exist seems crueller.

And one has to wonder about medical centres in far-flung spots who encourage the parents of desperately ill children to think they might be able not just to extend their children’s lives by a few months, but to make them better.

The impulse for mums and dads to do something for gravely ill children is understandable.

However, if there is limited time left, might it not be better to focus on their remaining quality of life together?