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Charlie Gard case explained Charlie Gard: The story of his parents' legal fight
(3 days later)
The parents of Charlie Gard have decided to end their legal fight over his treatment after a recent MRI scan showed he had irreversible brain damage. The plight of Charlie Gard attracted worldwide attention as a result of the legal fight that pitched his desperate parents against the medical profession. But at the heart of it all is an 11-month-old baby who has spent his entire young life in a hospital bed. This is how his story unfolded.
The 11-month-old is on life support at Great Ormond Street Hospital (GOSH). Who is Charlie Gard?
Why have they come to this decision? Charlie was born on 4 August 2016 with an exceptionally rare genetic condition called encephalomyopathic mitochondrial DNA depletion syndrome (MDDS).
A US doctor, Dr Michio Hirano, travelled to the London hospital last week to see if Charlie would be suitable to receive an experimental therapy - but results of an MRI scan showed that it was too late for the treatment.
Lawyers representing the parents said time had run out for Charlie and they no longer wanted to take him to the US.
The parents say he could have lived a normal life if he had been given treatment earlier, but they now want to treasure the short time they have left with him.
The couple will also now hold discussions with GOSH over how Charlie should be allowed to die.
Chris Gard and Connie Yates announced their decision as a High Court judge was preparing to oversee the latest round of a five-month legal battle.
What is wrong with Charlie?
Charlie has an exceptionally rare genetic condition called encephalomyopathic mitochondrial DNA depletion syndrome (MDDS).
Although he appeared perfectly healthy when he was born, his health soon began to deteriorate.Although he appeared perfectly healthy when he was born, his health soon began to deteriorate.
Charlie now has severe brain damage. Great Ormond Street Hospital (GOSH) said the moment Charlie was diagnosed, his prognosis was bleak.
He cannot open his eyes or move his arms or legs. Charlie now has severe brain damage and cannot open his eyes or move his arms or legs. His condition also means he is unable to breathe unaided, which is why he needs to be on a ventilator.
His condition also means he is unable to breathe unaided, which is why he needs to be on a ventilator. His heart, liver and kidneys are also affected, and his doctors say it is not clear if he feels pain.
Charlie's heart, liver and kidneys are also affected, and his doctors say it is not clear if he feels pain. Why did his parents want to go to the US?
Can he be treated? Charlie's parents, Connie Yates and Chris Gard, from Bedfont in west London, wanted Charlie to have an experimental treatment called nucleoside bypass therapy (NBT).
Charlie's parents, Connie Yates and Chris Gard, from Bedfont in west London, wanted Charlie to have an experimental treatment called nucleoside therapy. The treatment is not invasive and can be added to food.
A hospital in the US agreed to offer Charlie the treatment, and Charlie's parents had raised funds to take him there. A hospital in the US agreed to offer Charlie the treatment, and Charlie's parents had raised £1.3m in funds to take him there.
But Charlie's doctors at GOSH said they did not think it was the right treatment for him. Why did GOSH rule out the treatment?
After exploring various treatment options, including nucleoside drug therapy, the doctors came to the conclusion that none of them would improve Charlie's quality of life. No animal or human with Charlie's condition (RRM2B deficiency) has been treated with NBT, but the treatment has been previously offered to patients with a similar genetic disorder, TK2 deficiency.
They said Charlie's life support should be switched off and he should be allowed to die with dignity. But TK2 affects just the muscles, whereas Charlie's condition also affects other organs and his brain.
How did Charlie's doctors reach this decision?
Charlie's doctors said his brain was extensively damaged at a cellular level.
They said the US clinician offering the experimental treatment agreed it would not reverse this brain damage so GOSH applied to the High Court for judges to decide Charlie's future.
The High Court agreed with the GOSH doctors.
Charlie's parents then appealed against the decision, but courts ruled that the original decision should stand and that it would be in Charlie's best interests to be allowed to die with dignity.
Why did the case return to the courts?
GOSH applied to the High Court for a fresh hearing "in light of claims of new evidence" relating to potential treatment for Charlie's condition.
Two international hospitals and their researchers got in touch with GOSH with more information about nucleoside therapy - drugs designed to help treat MDDS.
The Pope and US President Donald Trump also offered to intervene and support Charlie's parents' plea.
The president of the Royal College of Paediatrics and Child Health, however, said such interventions from high-profile figures, no matter how well-intended, were "unhelpful".
What is nucleoside therapy?
The therapy is a treatment, not a cure. And it is highly experimental.
It has been used on some patients, but none with Charlie's type of MDDS.
There have not yet been any trials in mice to see if it would work in Charlie's condition, which is caused by a mutation of a gene called RRM2B. The faulty DNA means Charlie's cells cannot easily make energy to power his muscles and brain.
GOSH did apply for ethical permission to attempt nucleoside therapy on Charlie.GOSH did apply for ethical permission to attempt nucleoside therapy on Charlie.
By the time that decision was made, however, Charlie's condition had greatly worsened and the view was that his brain damage was too severe and irreversible for the treatment to help. However, by the time that decision was made Charlie's condition had greatly worsened and the view was his brain damage was too severe and irreversible for the treatment to help.
Prof Julian Savulescu, an independent ethics expert at the University of Oxford, said: "More than six months have passed since experimental therapy was first considered. We don't know how bad Charlie's brain damage is now. Whether experimental therapy is still warranted depends on whether there remains any prospect of any meaningful life." After contacting other experts in the condition from medical centres across the world, doctors came to the conclusion that Charlie's life support should be switched off and he should be allowed to die with dignity.
The High Court was due to judge on that crucial point. What happened in the courts?
Timeline Charlie's parents disagreed with the hospital and did not want his life support to be withdrawn, so doctors applied to the High Court for judges to decide Charlie's future.
In April, the High Court agreed with the GOSH doctors.
Charlie's parents then appealed against the decision, but courts ruled the original decision should stand and it would be in Charlie's best interests to be allowed to die with dignity.
The Supreme Court and the European Court both came to the same conclusion.
How the campaign became world news
Although Charlie's parents had seemingly exhausted all legal avenues, two prominent figures ensured Charlie's case became world news: Donald Trump and the Pope.
Following the European Court ruling, the Pope said he was following the case "with affection and sadness".
A statement released from the Vatican said the Pope "expresses his closeness to his [Charlie's] parents".
"For them he prays, hoping that their desire to accompany and care for their own child to the end is not ignored," it said.
The US president then offered his support, tweeting: "If we can help little #CharlieGard, as per our friends in the U.K. and the Pope, we would be delighted to do so."
After his tweet, the US doctor offering the therapy, Professor Michio Hirano from Columbia University Medical Center, was contacted by the president's team to see if there was anything more that could be done.
On 6 July, the professor co-signed a letter with other medical experts which suggested unpublished data showed therapy could improve the 11-month-old's brain condition.
They claimed that "ideally" the treatment would first be tested on mice but said that, in Charlie's case, there was no time for such a trial.
Why did the case return to the courts?
It was this unpublished data that prompted GOSH to apply to the High Court for a fresh hearing "in light of claims of new evidence" relating to potential treatment for Charlie's condition.
Under the initial High Court ruling, Charlie was not allowed to be transferred anywhere to be treated so it asked the court to examine the new evidence.
During this time, Professor Hirano flew over from America to examine Charlie.
What has the public reaction been?
Charlie's plight has proved to be very divisive.
Some people felt Charlie should be allowed to die with dignity, while others have disagreed with the doctors, arguing Charlie's parents should be allowed to decide where he is treated.
At one point the hospital said staff had received death threats and police had been called after other families, whose children were being treated at the hospital, had been harassed.
Charlie's parents said they did not condone the abuse and had also faced "nasty and hurtful remarks".
Why was the therapy eventually ruled out by the US doctor?
After examining Charlie, Professor Hirano said it was now too late to give Charlie the therapy. He came to the conclusion after seeing the results of a new MRI scan taken last week.
The scan had shown there was no muscle at all in parts of his body.
After hearing this, Charlie's parents decided to abandon the legal proceedings and ruled out taking him to the US.
They believe he could have lived a normal life if he had been given treatment earlier, but said they now wanted to treasure the short time they had left with him.
In its statement to the High Court on 24 July, the hospital said it was "increasingly surprised and disappointed" that Professor Hirano "had not read Charlie's contemporaneous medical records or viewed Charlie's brain imaging or read all of the second opinions about Charlie's condition".
GOSH said the professor had not taken the opportunity to see Charlie until last week, despite being offered the chance to do so by the hospital in January.
Even though the professor gave written evidence at all of the court cases, the hospital said it only emerged last week that he had not read the judge's ruling following the first High Court hearing in April.
The hospital added it was concerned to hear the professor state in the witness box at the High Court hearing on 13 July that he had a financial interest in some of the treatment he proposed prescribing for Charlie.
Professor Hirano said in a statement on 25 July he had "relinquished" that financial interest.
What happens to Charlie now?
Charlie's life support will be withdrawn at a hospice but lawyers acting for Charlie's parents are still in dispute with doctors over the detail of care plans.
Chris Gard and Connie Yates are applying to the High Court to keep Charlie alive for "a week or so" - longer than originally planned.
They have previously said he would not reach his first birthday on 4 August.
Timeline of Charlie's case