The Tragic Story of Charlie Gard
By Anne Reed
After months of emotionally grueling battles in court, Charlie Gard’s parents have ended the fight for his life. It seems unbelievable. Little Charlie’s life support will be disconnected before his 1-year birthday sometime within the next two weeks.
Charlie’s parents, Chris Gard and Connie Yates, released a gut-wrenching statement Monday after their decision ended the court battles. A new MRI revealed that Charlie’s muscles are, for the most part, irreversibly deteriorated.
“There is one simple reason for Charlie’s muscles deteriorating to the extent they are in now – TIME,” said Yates – “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.”
She stated that Charlie didn’t receive treatment months ago because he was found to have “irreversible brain damage” by the Greater Ormond Street Hospital doctors. And the judge ruled in favor of the hospital that wanted to let Charlie die, believing treatment to be pointless.
But now, the truth comes out. Those scans showed no evidence of irreversible brain damage according to an assessment by Dr. Michio Hirano, an American doctor specializing in Mitochondrial Disease, together with other specialists including internationally renowned pediatric neurologists, who were just recently given access to the MRI’s and EEG’s performed in January and April.
Hirano had been hoping to oversee a trial in which Charlie would undergo nucleoside bypass therapy — an experimental treatment taken as an oral medication. He told the judge that an “11% to 56% chance of clinically meaningful improvement existed” in muscular function based on those earlier scans.
But after those scans, came time…too much time.
Months passed while his parents fought, while they raised nearly $1.6 million to facilitate Charlie’s treatment in the U.S. Meanwhile little Charlie lay in a hospital bed, deteriorating.
Imagine yourself in his parents’ shoes after you’ve fought desperately and tirelessly for months on end to save your child. It feels as though the whole world is against you. Then finally, hope arrives and people begin to pay attention to your plight.
This month, the President of the U.S. and the Vatican spoke up on their behalf. The American specialist traveled to London to offer his expertise.
Then, late last week in court, without providing the results of Charlie’s newest MRI scan to his parents beforehand, Barrister Katie Gollop shared what she characterized as “sad reading” in court.
In tears, Yates objected that they had not been shown the scans. Charlie’s dad looked directly at the Great Ormond Street lawyer and said the word “evil” before the two stormed out.
Imagine being treated as a bystander while others determine the fate of your child. Your devotion and position as parents is disregarded or trivialized. Gard is right. Violation of God’s intended order is indeed evil. Wickedness abounds in the details surrounding the precious life of Charlie Gard.
The court assigned a guardian by the name of Victoria Butler-Cole to represent “the best interests” of Charlie. She is devoted too, but not to Charlie or to what is right and good. She is devoted to the cause of death. Cole is chairman of Compassion in Dying, an organization closely tied to Dignity in Dying, which campaigns for laws to legalize euthanasia. As a matter of fact, the name of the organization was previously Voluntary Euthanasia Society.
This entire situation is reminiscent of something C.S. Lewis wrote in the classic novel The Screwtape Letters:
The greatest evil is not now done in those sordid “dens of crime” that Dickens loved to paint. It is not done even in concentration camps and labour camps. In those we see its final result. But it is conceived and ordered (moved, seconded, carried, and minuted) in clean, carpeted, warmed and well-lighted offices, by quiet men with white collars and cut fingernails and smooth-shaven cheeks who do not need to raise their voices. Hence, naturally enough, my symbol for Hell is something like the bureaucracy of a police state or the office of a thoroughly nasty business concern.”
Could those words be more fitting?
“All we wanted to do was take Charlie from one world-renowned hospital to another world-renowned hospital in the attempt to save his life and to be treated by the world leader in mitochondrial disease,” said Charlie’s mother.
“His body, heart and soul may soon be gone,” she continued, “but his spirit will live on for eternity and he will make a difference to people’s lives for years to come. We will make sure of that.”