Nine-month-old Charlie Gard has mitochondrial depletion syndrome. His body cannot make the all energy it needs to run, so it slowly breaks down and ultimately fails.
There is no known cure.
Charlie has severe brain damage. he lives on life support, without which he would quickly expire.
Charlie’s parents, Chris Gard and Connie Yates, are willing to do almost anything to try to save their son. Their latest plan is to try an experimental treatment in America.
This experimental treatment won’t cure Charlie. At the most, it might return to him a tiny bit of brain function. The disease will progress nonetheless.
British doctors feel that little Charlie has suffered enough. With no hope of surviving, let alone functioning, they see no reason why the child should be kept alive.
The main argument advanced by the doctors is that young Charlie is in pain, and continuing his life just continues that pain.
Even the specialists who would provide the experimental treatment— nucleoside bypass therapy—aren’t sure it would do the slightest good for the child, given the degree of deterioration.
Lower courts have ruled that the child is going to die soon, and should be allowed to die. They support giving the child nothing but painkillers, taking him off the ventilator which breathes for him.
Gard and Yates have appealed to EU courts, and are now facing the UK Supreme Court.
Their claim is simple: there son is not in pain, and what is :”best” for their son is that he be given every possible chance to enjoy every second of life until nothing can keep him alive,.
At issue are the questions of the meaning and value of life, the reach of the law—can the law overrule parents? Can the law demand that parents let a child die? Is “death with dignity” even a meaningful concept? Is life, even if supported entirely by machines, intrinsically valuable?
Chris Gard and Connie Yates are not worrying about the underlying issue, the conceptual battles being fought over their son.
Chris Gard and Connie Yates want to spend more time holding Charlie in their arms, hoping he might show a flash of recognition in his eyes … maybe even the hint of a smile … just one more time.