One of the most extraordinary aspects of the Charlie Gard story is the way in which it has attracted global attention, and such widespread sympathy and support.
The 11-month-old little boy suffers from a rare genetic condition, and has been on life support at London’s famed Great Ormond Street Hospital. His deteriorating condition means he has suffered from brain damage, as well as problems with his liver, kidneys and heart, and he has been unable to breathe on his own.
The medical experts were in agreement that nothing more could be done for little Charlie, and he should be allowed to die. Nature should take its course. This was backed by the courts.
And yet, the picture of one small baby, along with his young parents, Connie and Chris, still clinging to hope, seemed to go around the world like Ariel, prompting a wave of sympathy, including from Pope Francis. Some 350,000 people signed a petition to allow Charlie to go to the United States for a last-ditch treatment, and an American pastor with a reputation for campaigning, Patrick Mahoney, took up Charlie’s cause.
It’s been a poignant case, and there are complex layers of issues around it. Do parents – or the courts – have the final say on whether a child’s life may be prolonged?
Doctors, too, like to exercise their own control and affirm their own expertise. They don’t always like the suggestion that another bunch of medics might be more successful. And is experimental treatment always the kindest option?
Many issues have been involved over the case of Charlie Gard, whose name has attained the status of celebrity. But what it shows, above all, is that people are just hugely touched by the story of a baby’s struggle for life. The emotional response to Charlie Gard hasn’t been mere sentimentality: it’s about something in the human spirit that affirms both hope and life.
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I must mark the passing of the Russian poet Irina Ratushinskaya, whom I interviewed in the 1990s, a gentle woman with a beautiful soul, as well as a sense of humour. She had spent many years in a Soviet labour camp for having published poetry contrary to “communist ideas”. She suffered greatly in this gulag, but was sustained by her deep Christian faith. She also said that her faith helped her to avoid being damaged by hatred and bitterness.
Irina’s health had been badly affected by the labour camp, and she thought she could never have children, but was overjoyed when she gave birth to twin sons in 1992.
Despite so many years of official atheism, the Russians are a spiritual people. If you get drunk with a Russian, they will usually start talking about “dushá, dushá” – the soul.
Irina Ratushinskaya died before her full span of life, but she left behind an uplifting memoir, Grey is the Color of Hope, and a witness to faith sustained through adversity.
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When Ivanka Trump took her father’s seat at one of the big G20 meetings last week in proximity to Angela Merkel, Theresa May, President Xi Jinping of China and Jim Yong Kim, president of the World Bank, there were cries of protest about her “unelected, unqualified” status.
R Nicholas Burns, a Harvard professor of diplomacy, said it was a completely unacceptable breach of diplomatic protocol.
Coincidentally, I was just then reading about another powerful daughter who stepped into her father’s shoes when required: Lucrezia Borgia.
“After Rodrigo Borgia had been elected Pope under the name of Alexander VI, he often made use of his talented daughter Lucrezia in papal affairs,” wrote the historian Amaury de Riencourt.
The young Lucrezia was promoted to be the governor of a city, and entrusted with advancing the Vatican’s diplomatic interests. “Twice, when compelled to leave Rome on affairs of state, [Pope Alexander] left her in complete charge of the Vatican, with full authority.”
Alexander VI was, admittedly, one of the bad and decadent popes (though with a fine taste in art), but Lucrezia was nevertheless an interesting example of an “unqualified” daughter taking over her father’s affairs, and apparently perfectly proficiently – at least from an administrative point of view. But we cannot, obviously, regard the episode as edifying!
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