A young boy is disconnected from life support. Dad disconnects his autistic son from life support. Lifespan and distribution in the world

From life support systems. He never celebrated his first birthday. send their son for treatment to the USA, raised money, but in the end the court prohibited taking the child from the hospital.

He didn't live a week past his first birthday. 11-month-old Charlie Gard, whose short life captured the world's attention, was eventually taken off a ventilator and died in a London hospice.

The place where this happened is kept secret - the story of this child was so emotional and scandalous that the authorities are trying to quickly hide everything connected with him under the carpet.

Charlie was born a completely healthy child. This is clear from the video that was leaked to the British press. But within a month everything changed. Doctors diagnosed him with a rare disease - mitochondrial DNA depletion syndrome. Charlie was admitted to London's Great Ormond Street Hospital. This is the best children's clinic in the UK. But local specialists could not help. Charlie's condition worsened. By the end of last year, he could no longer breathe on his own and lost his sight and hearing.

The hospital administration insisted that the fight for his life was pointless. Parents could not come to terms with this. They claimed that their son could see and hear, and they found a specialist in the United States who was willing to try to save Charlie using experimental nucleazide therapy. But the London clinic refused to release the child, explaining that treatment in America would only bring him additional suffering.

The trials began. Charlie's parents lost them one after another. We reached the European Court of Human Rights, but even there the same verdict was heard - to disconnect the baby from artificial life support.

An ordinary postman and a nurse were faced with a system that took away their right to decide the fate of their own child. The public reaction was completely different - voluntary donations for the treatment of Charlie Gard amounted to one million three hundred and fifty thousand pounds sterling. The last hope appeared after US President Donald Trump and the Pope stood up for the baby. The High Court of London finally listened to Columbia University professor Michio Hirano, who offered his therapy, and even allowed him to come to England to examine the child. But, after visiting the hospital and studying the data from the latest brain scan, the American expert admitted that at this stage he was no longer able to help.

Charlie's parents couldn't even say goodbye to their son the way they wanted. They were not allowed to take the child home. It is unknown where Charlie Gard died, but his passing did not go unnoticed.

Vice President Pence tweeted:

Saddened to hear of the passing of Charlie Gard. Karen & I offer our prayers & condolences to his loving parents during this difficult time.

— Vice President Pence (@VP)

A dramatic story from the UK has gone far beyond the confines of one hospital ward and even the country. The fate of the boy Charlie with a complex genetic disease can hardly leave anyone indifferent.

The fact is that British doctors and a number of courts decided to disconnect a child with multiple pathologies from life support systems. But his parents continue to fight for his life. And then everything got mixed up: the grief of one family, the intransigence of doctors and even politics.

A London hospital room and crying parents. Shouting about their misfortune through social networks is their last chance. British doctors don’t want to treat their seriously ill son; they say it makes no sense, but they won’t let him leave the hospital either.

“We said we would like to take him home. Or at least to a hospice. They said, “No. He should die in this hospital,” says Chris Gard, the child’s father.

“They said they couldn't arrange transportation. We said that we would organize everything ourselves and pay for everything. They said, "It's impossible," adds Connie Yates, the child's mother.

They begged and begged, but to no avail. Charlie has a very rare genetic disease. Eight weeks after his birth, he began to lose weight dramatically. Doctors diagnosed him with mitochondrial DNA depletion syndrome. Mutations in the child’s genes lead to malfunctions of the liver, kidneys, heart and brain damage. Charlie can't see, can't hear, and can't move. There is no cure for this disease, but there is experimental therapy. It is carried out in clinics in the USA. Charlie's parents raised a huge amount for treatment - more than a million pounds. On social networks, concerned people from all over the world launched a campaign in support of the child. However, Charlie never went anywhere - British doctors do not allow it.

“Despite the fact that we have money and doctors in America who are ready to accept Charlie, they do not allow us to take the child to another hospital to save him,” says Connie Yates.

The parents tried to challenge the doctors' decision in the courts. However, British justice sided with the doctors. They argue: the child in his current condition can no longer be helped; moreover, he should be disconnected from all life support systems so that he does not suffer. The parents' last hope was the human rights court in Strasbourg. However, he actually sentenced the boy to death.

“Connie and Chris are just shocked. They cannot understand and accept this decision,” explains Emily Smith-Squier, a family spokesman.

The court's decision provoked a wave of indignation both on British streets and on social networks:

“What kind of fascist laws are these in Britain, according to which the hospital decides that the child must die, and the parents do not have the right to say no.”

“Lord, please stop this madness! Bring back those times when doctors did everything in their power to save a person’s life!”

The situation suddenly reached the political level, and on the other side of the ocean. The story of a little boy who was not allowed to go to America for treatment by British doctors reached the President of the United States. Representatives of his administration contacted Charlie's parents by telephone, a White House spokeswoman said. However, the details of this conversation are still unknown.

Trump tweeted: “The US would be happy to help Charlie.” Journalists immediately saw in this the desire of the head of the White House to improve his image in the eyes of the British. To say that the residents of Foggy Albion do not like him is to say nothing. Many openly oppose his visit to London.

As for Charlie’s disease, there are indeed children in the world with the same diagnosis who, thanks to therapy and their parents, continue to successfully fight for their lives. Like, for example, the son of Arthur Estopinan. He demonstrates to journalists that although the child does not walk on his own, he can move his arms and understands perfectly what is happening around him.

American Arthur actively supports the campaign in defense of Briton Charlie, calling for this child, like his son, to be given a chance to live.

"Two boys. Both have mitochondrial disease. Both require the same treatment. What is the difference? Only one of them receives this treatment. He can laugh, sit, ask for an iPad, hold his father's hand and play with his toys. And Charlie Gard was denied treatment, the human right to life,” writes Arthur Estopinan.

Charlie's parents do not leave the London hospital for a minute. According to them, doctors must disconnect the child from all life-sustaining devices in the near future.

In April this year, the High Court in London ruled that Charlie Gard (at the time he was 8 months old), suffering from a rare genetic disease - mitochondrial DNA depletion syndrome, should be taken off life support. Without specialized medical care, the child will quickly die. Doctors at the Great Ormond Street Clinic, where Charlie spent most of his life, asked the court for permission to disconnect the child from life support. In court, they testified and stated that the child’s brain was hopelessly damaged, he had no chance of recovery, and doctors tried all possible methods of treatment.

Charlie's parents, Chris Gard and Connie Yates, intend to fight to the last for their son's life. They went through all the circles of the appeal hell of the British judicial system, collected 1.3 million pounds (94.5 million rubles at the current exchange rate) on a crowdfunding platform for the treatment of a child and want to receive experimental treatment in the USA. After the appeals, the judges left them several weeks to say goodbye to the child, and the hospital organized a picnic for the Gard family on the roof, where they could take the child without disconnecting him from the machine. The gardaí, however, also took this time to appeal to the European Court of Human Rights, which ruled that the child had the right to life, care and treatment like any other, and overturned the High Court's decision. Now parents will be able to try the experimental treatment.

Charlie Gard suffers from mitochondrial DNA depletion, a rare condition that causes progressive muscle weakness, "sapping the energy from a child's muscles and organs," according to the Daily Mail. Without special equipment, Charlie cannot breathe on his own, he cannot see (although the child’s mother posts photographs of the child with open eyes on social networks and claims that he reacts to the sun, light, wind and music. The medical commission of Great Ormond Street Hospital in London initiated a lawsuit about Charlie Gard being taken off life support. A hospital spokesman said that all treatment options using the most innovative methods were considered by a committee of doctors - but, according to doctors, it was impossible to cure the child. Typically, children with this disease do not live past the age of ten months.

But Chris Gard and Connie Yates are planning to move their son to the United States, where he will undergo expensive experimental treatment. We are talking about nucleoside therapy (nucleoside bypass therapy, here is a fairly old one, which suggests that this is possible in principle). Parents hope that it will launch the natural process of DNA repair and further substances already necessary for the child will be produced.

Nucleoside therapy has already cured 18 people in the United States, although doctors here have doubts: Charlie’s case is too severe.

However, the parents do not count on the fact that he will be fully developed, will run around merrily and recite Shakespeare, but do not consider this a sufficient reason for Charlie to die.

We will be following this story.

Strictly speaking, this little resident of Great Britain did not live exactly a week before his first anniversary. Charlie was born to Connie Yates and Chris Gard on August 4, 2016.

When he was only 3 months old, his parents became concerned about their son's weight loss and constant weakness. An examination by doctors revealed a terrible disease - mitochondrial DNA depletion syndrome. This is a genetic disease, and, unfortunately, both parents turned out to be carriers of the defective gene. The boy was doomed at the moment of conception.

There is no cure for the disease and the child would have died from muscle weakness and brain damage. It is not known what would have happened first - the cessation of breathing due to muscle weakness or the fading of the brain.

In any case, his parents decided to fight for the life of their son. They began a campaign to raise funds for his treatment, although it did not even exist in nature. There are only 16 people in the world with this diagnosis and, in fact, they are all doomed.

However, several foreign doctors promised to try experimental treatments for Charlie. People from all over the world donated £1.3 million to save Charlie. Doctors at the British Great Ormond Street Hospital, where the child was connected to life support all this time, declared a strong protest. They went to court demanding that the boy have the right to die without suffering.

According to doctors, every minute of such a life brings him agony, and the parents, in their blind faith in a miracle, only prolong the child’s suffering.

Here's how the epic fight for Charlie's right to die unfolded:

11 April. The court informed the parents that life support would be turned off. Because prolonging Charlie's life would be too cruel.

May 25. The couple appealed to the courts of appeal, but they upheld the High Court's decision.

May 31. The latest delay was granted for review by the UK Supreme Court, but it recognized the decision of the previous courts as legal.

27th of June. The European Court of Human Rights has ruled that it will not overturn the decisions of the British courts. “Continued treatment of Charlie will cause significant harm.”

30 June. Following heartfelt pleas from Chris and Connie, Ormond Street Hospital agreed to give them more time to say goodbye to Charlie.

July 10. The case returned to court when the family asked permission to send the terminally ill child to the United States for "miracle" treatment. More than 490,000 people signed a petition to allow the boy to fly overseas.

July 17th. An American doctor flew to the UK to meet with British doctors. Dr. Michio Hirano believed he could help Charlie.

July 18— Dr. Hirano met with doctors on Ormond Street. The conclusions of the consultation were presented to Judge Nikolai Francis, who promised to make a final decision on July 25.

July 19— The US Congress, at the suggestion of President Donald Trump, gave Charlie American citizenship in order to provide him with treatment in the United States. Dr Michio Hirano failed to convince British consultants that his experimental treatment would help the boy. At the same time, the Pope offers the boy Vatican citizenship and a flight to Italy for treatment.

July 20— Charlie's parents lose their nerve in court after the hospital's lawyer announces the results of a new MRI with the words "a very sad picture." Connie burst into tears and Chris screamed that “there is evil going on here!”

July 22— Ormond Street Hospital calls for a police cordon after staff receive anonymous death threats.

July 24— Chris Gard and Connie Yates withdraw their application to the court, demanding permission to travel to the United States. They admit the damage to their 11-month-old son's muscles and brain is irreversible.

July 25. Ormond Street Hospital tells Charlie Gard's parents that life support will not accompany the child if they decide to take their son home to die.

26 July. After a very emotional day in the courtroom, the judge gave Charlie's parents until July 27 to come to terms with the hospital about the boy's final moments. Will it be a hospice or turning off the device right in the hospital.

July 27— Day of the last agreement. Judge Eustis Francis approved the plan, which involved turning off the machine immediately after transfer to a hospice.

July 28th Charlie's mom said he lost his battle with his illness and died a week before his first birthday. In a statement, the parents said: “Our beautiful little boy is gone. We're proud of you, Charlie."

July 30. It was decided that Charlie would be buried along with his two beloved monkeys, with whom he had not parted all this time.

This story raised critical ethical issues: Do parents have the right to cause suffering to their child, even if they believe that they are saving him? Where is the line between common sense and faith in a miracle and who has more rights to stand up for a little person - doctors, parents, politicians, priests or judges?

Charlie died, but with his death this child did a lot for the adults who remained alive.

Doctors at London's Great Osmond Street Hospital (GOSH) are preparing to remove life support from ten-month-old Charlie Gard, who suffers from a terminal illness. The procedure is scheduled for the next few hours - despite the protest from his parents, who until the last tried to find methods of alternative treatment for his illness. However, according to the British Children's Law of 1989 (revised in 2004), prolonging the life of a baby in his condition is equivalent to prolonging his torment.

Chris Gard and Connie Yates wanted to travel with their son to the United States to undergo a course of experimental therapy, and independently raised ₤1.3 million necessary to bring the child to America and pay for the required procedures. However, doctors at Great Osmond Street Hospital refused the parents this, prompting them to go to court.

The UK Supreme Court did not help: the child was refused to be taken to the USA for treatment. According to the judges, who agreed with the doctors, the experimental treatment would not have saved Charlie from inevitable death, but would only have prolonged his suffering. The European Court of Human Rights, which ruled in favor of the GOSH doctors, also agreed with the arguments of the British Supreme Court.

Charlie is in the final stages of an extremely rare disease called mitochondrial DNA depletion syndrome. The baby is one of only 16 people in the world who have been diagnosed with this condition to date. The doctors, who prevented his parents from taking Charlie to the United States, announced their decision to remove him from life support in the coming hours in order, in their words, “to allow him to die with dignity.”

In desperation, the parents posted an appeal on YouTube, saying they were absolutely devastated by recent court decisions and British legislation that prevented them from making treatment decisions for their own minor child. Doctors also did not allow the parents to take their son home.

“We are absolutely devastated that we have to spend the last hours with our baby. We can't decide whether our son will live, and we can't choose where Charlie will die. The state failed us, and most importantly, Charlie, in this whole story,” Chris and Connie shared with their viewers, who were raising funds for the treatment of their child.

In the video message, the parents also said that they were pressured by doctors at GOSH Hospital and were initially promised “all the time it would take to say goodbye to their son.”

Hospital representatives did not comment on the parents' statement.

“As with any of our other patients, we cannot and will not discuss (with journalists. - RT) specific details of the medical history and our care. This is a very stressful situation for Charlie’s parents, and we all deeply sympathize with them,” The Independent newspaper quotes a hospital spokesperson as saying.

Bypass surgery as a salvation

Mitochondrial DNA depletion syndrome refers to a group of diseases that affect various tissues. With mitochondrial depletion, cells are not saturated with oxygen and do not produce internal energy. In the case of little Charlie Gard, the disease affected muscle tissue, kidneys and brain. The disease usually causes death in infancy or early childhood. At the moment, there is no cure for it yet, but some procedures (like those that Charlie’s parents planned to carry out in the USA) provide relief from the symptoms of the disease.

One such procedure is nucleoside bypass. This type of therapy involves taking a whole series of special drugs that can “patch” Charlie’s mitochondrial DNA. American experts reported 18 successful cases of maintaining life using this technique.

Restrictive medicine

The story of little Charlie caused a wide resonance in Britain. During the active discussion, demands were made more than once to revise the legislation, which in such cases leaves the right to decide the fate of children to the state, and not to parents. In 2012, in neighboring Ireland, prohibitive healthcare legislation led to the death of a patient - pregnant Savita Halappanavar died right in the hospital due to a miscarriage. This happened after the doctor refused to perform an abortion on her, citing the law, and also, as he later admitted, because of religious beliefs.

After this, changes were made to the country's legislation to allow artificial termination of pregnancy.

Until 2012, Ireland had a law from 1861 that completely prohibited abortion and provided for life imprisonment for a doctor or mother who terminated a pregnancy on her own.