Charlie Gard did not live long enough to celebrate his first birthday. It would have come this Sunday, August 4th. The shortness of little Charlie’s life is a tragedy. But his life itself was equally a tragedy. Because Charlie stopped being a baby, and became a cause.
Charlie was born with a rare, incurable, untreatable, and always fatal hereditary disease, infantile onset encephalomyopathic mitochondrial DNA depletion syndrome (MDDS). According to one news story, only 16 people in the world have ever had it.
Charlie didn’t choose it; he didn’t do anything to cause it; it just happened.
At the risk of over-simplifying, human cells have three parts. DNA, the double-helix blueprint in the cell’s nucleus. Cytoplasm, a jelly-like fluid that replicates the primordial sea from which we all came. And the cell membrane, the sack that holds it all together.
Think of mitochondria as fish that swim in that sea, producing energy for the cell’s operation.
Charlie’s mitochondria malfunctioned. They couldn’t produce energy for his life.
Conflicting visions
As Alheli Picazo explained in Maclean’s magazine, “MDDS starves Charlie’s muscles, kidneys, and brain of the energy needed to function… Charlie also suffers from frequent seizures and has extensive, irreversible brain damage...”
Doctors at Great Ormond Street Hospital in London argued that Charlie should be allowed to die. Palliative care would make what was left of his life as painless as possible. They applied for permission to have his ventilator switched off.
But Charlie’s parents, Connie Yates and Chris Gard, refused to accept that he was dying. I can’t blame them for that -- I would have done the same.
But then Charlie became politicized.
A neurologist in the U.S. claimed that an experimental treatment -- tried on just nine people, none with MMDS -- might improve Charlie’s chances. Charlie’s parents grabbed at a straw of hope. Sympathetic crowd-funding raised 1.3 million pounds towards treatment in America.
Yates and Gard took Charlie’s case to court. Right up to the British Supreme Court, and then to the European Court of Human Rights. Four levels of courts all ruled in favour of the medical evidence.
Political football
Then the conservative Christian caucus in the U.S. grabbed Charlie and ran with him. Congress considered making him an honorary U.S. citizen. The Susan B. Anthony List lobbied 500,000 members on his behalf. President Trump saw political advantage in meddling in another country’s legal system. "If we can help little Charlie Gard… we would be delighted to do so," he tweeted.
Syndicated columnist Michael Coren called Trump’s intervention, “Typically irresponsible and insensitive… It's colossally ironic that as he removes medical insurance from millions of Americans, the president makes an empty gesture to a dying child.”
U.S. evangelical pastor Reverend Patrick Mahoney, a fervent anti-abortionist, flew to London to become self-anointed spokesperson for Charlie. Pro-life groups picketed the hospital. They called the doctors “murderers.” Staff received death threats. The term “death panels” was bandied about.
Same old arguments
These are the same people, you may recall, who declared that the Canadian medical system included “death panels” during the early debates over Obamacare.
And the same people who demand that all fertilized ova must proceed to birth. Even though in this instance -- had Charlie’s disability been diagnosed early enough -- an abortion might have spared Charlie and his parents a year of agony.
And they’re the same people who lobby against medically assisted suicide for the terminally ill. On the grounds that human life is sacred. Only God has the right to decide when a life should end.
God would have ended Charlie Gard’s life months ago, if human intervention had not artificially prolonged it.
They are not, in fact, pro-life at all. They are pro-suffering.
They believe in a vindictive God who doles out rewards and punishments. They’re confident they’ll receive the rewards. But if someone else is suffering, even a one year old baby, it must be God’s will.
Mercy…
In the meantime, the neurologist who started it all admitted that the treatment he had proposed was based only on “a theoretical scientific basis.” Given Charlie’s “catastrophic and irreversible brain damage,” he conceded it was “unlikely” the experimental therapy would do anything more than “prolong Charlie’s suffering.”
On Monday, Connie Yates and Chris Gard recognized that this was no longer about Charlie’s life. It had become what Michael Coren called “a clash of cultures.”
And so, last Monday, they announced that they were going to let Charlie die.
Good for them. And a pox on those who tried to exploit little Charlie to support their own ideologies
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Copyright © 2017 by Jim Taylor. Non-profit use in congregations and study groups encouraged; links from other blogs welcomed; all other rights reserved.
To send comments, to subscribe, or to unsubscribe, write jimt@quixotic.ca
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YOUR TURN
Tom Watson had his own stories about losses: “First of all, I'm glad that it all worked out for you and Joan in the end. Second, thanks for sharing the insight you gained about yourself. No matter what comes our way, our attitude will make the difference as to how we handle it.
“In April of 1960, my father's barn, filled with dairy cattle, burned to the ground. It was a quick way out of the milking business, his livelihood for all his 53 years to that point. My attitude...devastated. His attitude...something different will come along tomorrow. His attitude was the better one.
“Then in April 1984, an arsonist set fire to the church at which I was minister in Brantford, Ontario. The main part of the church was saved, the office area wasn't. Everything I had in my office, including all my books plus years of sermons I had carefully kept in binders, was gone. It was a serious shock. I went into a lamenting funk. Then, a few days later, a friend called and said, ‘You're better off without all that old stuff anyway. Time to have some new thoughts!’ Wise words provided the turning point. My attitude shifted from what was gone to what was yet to come.”
Oli Cosgrove wondered about causes: “I lived in Kelowna from 1947 to 1953, and my parents lived there until 1986. I don’t remember even one forest fire during those years. Now, it seems, these fires are almost expected. What could possibly have changed so much?”
Editor colleague Perry Millar in Saskatoon sent good wishes.
Another editorial friend, Chris Blackburn, wrote, “Glad you, Joan, your cat and your house survived. I'll remember your comment: ‘People matter; possessions don't.’”
Isabel Gibson agreed: “I'm glad you have a new insight. Would that every potential disaster end as well.”
Apparently I’m not the only person who doesn’t know what to do with 35-mm slides. John Shaffer wrote, “The retirement facility where we live encourages us to have a ‘to go bag’ in case of an evacuation. It would not include my slides. Who would care about my slides? But still I cannot throw them away. At least the number is not increasing. Would you like to keep them for me?? You could even look at them, if you wish.
“That is the solution. You send me your slides and I will send you my slides and soon they will be gone.”
Also Bob Rollwagen: “Great insight to a part of life that does not receive much advance planning. Like all aspects of the modern human condition, there is a range, from hoarders who cannot discard anything to those who discard as soon as they replace or have a new item.
“I [too] have thousands of photos stored in my computer with the plan to view them or print them or who knows what. I may never, ever look at them again -- but there is that comfort that they are there! My partner edits every picture as it appears and discards any that are not well composed or lit. A person at the other end of this spectrum. There is no correct position, we are both happy.
“Loss of what makes us comfortable and at peace with our existence will be extremely painful, in the moment and always in our memory.”
Ralph Milton commented on misleading stereotypes: “I’ve had few encounters with police, but in my experiences, they have always been polite. Even the U.S. cops may be suffering under a reputation created by a few macho characters singled out on the evening news. A few years ago, in Tucson, I smashed my son’s car. The police arrived very promptly. Five of them had just been dealing with another situation nearby. The Unit was headed by a female officer. I was obviously at fault in the accident, but she took the time and made a couple of phone calls so that I could pay my fine and still catch an early morning flight home.
“Police, like politicians, are often the victims of media caricatures.”
John McTavish responded to letters about climate change: “George Monbiot's book Heat begins with a depressing anecdote. In 2005 Monbiot gave a talk on climate change in which he claimed that there was little chance of preventing runaway global warming unless greenhouse gases are cut by 80 per cent.
“Someone in the audience asked him what the country would look like with an 80 per cent cut.
“Monbiot deflected the question to an expert in the audience, Mayer Hillman, who said: ‘A very poor third-world country.’
“No wonder the sprinklers in North Dakota are still going and Trump is in the White House. We're all in denial.”
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TECHNICAL STUFF
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PROMOTION STUFF…
Ralph Milton ’s latest project is called “Sing Hallelujah” -- the world’s first video hymnal. It consists of 100 popular hymns, both new and old, on five DVDs that can be played using a standard DVD player and TV screen, for use in congregations who lack skilled musicians to play piano or organ. More details at www.singhallelujah.ca
Ralph’s HymnSight webpage is still up, http://www.hymnsight.ca, with a vast gallery of photos you can use to enhance the appearance of the visual images you project for liturgical use (prayers, responses, hymn verses, etc.)
Wayne Irwin's “Churchweb Canada,” an inexpensive service for any congregation wanting to develop a web presence, with free consultation. <http://www.churchwebcanada.ca>
I recommend Isabel Gibson’s thoughtful and well-written blog, www.traditionaliconoclast.com
Alva Wood’s satiric stories about incompetent bureaucrats and prejudiced attitudes in a small town -- not particularly religious, but fun; alvawood@gmail.com to get onto her mailing list.
Tom Watson writes a weekly blog called “The View from Grandpa Tom’s Balcony” -- ruminations on various subjects, and feedback from Tom’s readers. Write him at tomwatso@gmail.com or twatson@sentex.net