REST IN PEACE, CHARLIE
As the baby whose fight raised so many questions about our age dies in hospice a week before his first birthday . . .
HIS battle for survival captured hearts around the world.
But little Charlie Gard lost his fight for life yesterday – exactly a week before his first birthday.
‘Our beautiful little boy has gone,’ said his heartbroken parents. ‘We are so proud of you Charlie.’ The desperately-ill baby had survived three plans for his life-support to be removed.
Yesterday his breathing tube was withdrawn at a hospice. His death ends months of turmoil and court drama in which Chris Gard and Connie Yates fought for treatment they hoped would save him. And they spent the last days of their son’s life in a failed attempt to bring him home for their final goodbyes.
Following the announcement of his death just after 6pm, tributes came in
from around the world. Theresa May said she was deeply saddened and US vice-president Mike Pence expressed his regret. ‘RIP Charlie Gard’ was trending on social media.
Pope Francis, who had offered medical help at the Vatican hospital, tweeted: ‘I entrust little Charlie to the Father and pray for his parents and all those who loved him.’
Charlie was being treated at Great Ormond Street, which had insisted he could not be looked after at home in his final days.
The hospital also opposed his parents’ plan for an extended time in a hospice. A High Court judge agreed – to the anger of Miss Yates, 31.
She said: ‘We just want some peace with our son, no hospital, no lawyers, no courts, no media – just quality time with Charlie away from everything to say goodbye to him in the most loving way. We’ve had no control over our son’s life and no control over our son’s death.’
The case attracted huge attention with supporters calling themselves ‘Charlie’s Army’ helping raise £1.35million in crowdfunding and turning up outside court.
Vowing that they would do whatever it took to keep their son alive, Miss Yates and Mr Gard tirelessly attended court hearings from April to July. Miss Yates wore a heart-shaped necklace bearing her son’s name while Mr Gard, 33, clutched Charlie’s toy monkey throughout.
Donald Trump weighed in, expressing his support for the family.
Charlie, who is only the 16th person in the world to have his rare form of the genetic condition mitochondrial depletion syndrome, spent most of his short life in hospital.
The condition causes progressive muscle weakness and brain damage but his parents believed doctors in America might have been able to save him thanks to a non-invasive experimental treatment known as nucleoside bypass therapy.
Last night, a Great Ormond Street Hospital spokesman said: ‘Everyone at Great Ormond Street Hospital sends their heartfelt condolences to Charlie’s parents and loved ones at this very sad time.’
Emotional footage, released by the family days before his death, showed the little boy celebrating his two-week birthday with his parents as his mother giggled in the background. In the video, he is seen grasping a birthday card as he wriggles around on a changing mat at his parents’ home in Bedfont, west London. Within weeks of the footage being filmed, the couple noticed Charlie was unable to lift his head and support himself.
After medical tests, they discovered that he suffered from a rare genetic condition which doctors at Great Ormond Street said they would not be able to cure.
Miss Yates and Mr Gard always maintained they might be able to save their son, who they described as ‘perfectly healthy’ when he was born, if they could fly him to the US for treatment. But doctors at Great Ormond Street said the experimental treatment would not help him and could cause significant harm.
Charlie’s parents have been in and out of the courts for months, pleading for officials to let them save their son. But last week, they admitted a recent MRI scan on his body showed it was now too late for any treatment.
On Monday, the couple reduced the High Court to tears when they revealed their decision to let him go. Miss Yates held the court spellbound reading a statement of raw emotion, which Mr Gard repeated outside court and had to hold back tears as he said of Charlie: ‘We are so sorry that we couldn’t save you.’
Describing the end to their battle for their ‘absolute warrior’ son as the ‘most painful of decisions’, Mr Gard went on: ‘Mummy and Daddy love you so much Charlie, we always have and we always will and we are so sorry that we couldn’t save you.’
Miss Yates and Mr Gard attacked Great Ormond Street for wasting time rather than letting them try the therapy.
Miss Yates said: ‘Had Charlie been given the treatment sooner, he would have had the potential to be a normal, healthy little boy.’
Their final wish was for Charlie to be treated at a home and when this was denied, they asked if he could be taken to a hospice for a week instead. But Great Ormond Street insisted there was ‘simply no way’ Charlie could spend any significant time outside an intensive care facility – despite nurses at the hospital offering to work 12-hour shifts on their days off to facilitate the couple’s wish.
The disputes went through the High Court, the Court of Appeal and the Supreme Court. All ruled treatment should end so Charlie could ‘die with dignity’. AUGUST 4, 2016: Charles Matthew William Gard is born at 8lb 3oz to first-time parents Connie Yates and Chris Gard. LATE SEPTEMBER 2016 – At eight weeks old Charlie begins to lose weight and strength, soon choking on his milk. OCTOBER 2016 – Charlie is taken to hospital and transferred to Great Ormond Street where tests reveal he has mitochondrial depletion syndrome. His strain of the disease is so rare he is believed to be only the 16th sufferer in the world. AUTUMN 2016 – Charlie’s lungs become too weak to function without the help of a mechanical ventilator. Miss Yates, 31, finds a specialist in the US involved in testing nucleoside therapy on sufferers of the condition. It has helped save some patients, but had never been tried on anyone with Charlie’s rare type. JANUARY 2017 – Great Ormond Street doctors look into giving Charlie the drug, but say treatment would be futile as his seizures have caused irreversible brain damage. Charlie’s parents then make contact with the American doctor. MARCH 2017 – Great Ormond Street asks the High Court to let Charlie Gard die. Mr Justice Francis gives his parents a month to make their case for the pioneering treatment in the US. They ask the public for help to reach the £1.2million needed to travel to the US. Within days Daily Mail readers help to raise £197,000. APRIL 2017 – Charlie’s parents hit the £1.2million target. Over a three-day High Court hearing, Charlie’s parents beg Mr Justice Francis to give their boy a chance. But Charlie’s doctors tell the court he is blind, deaf, brain damaged and likely to be suffering. Mr Justice Francis sided with the doctors and ruled they must ‘let him slip away peacefully’. MAY 2017 – Charlie’s parents go to the Court of Appeal but judges later uphold the High Court decision. His parents then appeal to the Supreme Court. JUNE 2017 – On June 8 the Supreme Court formally turns down Charlie’s last hope of survival. On June 27, European judges back the British doctors who said it would be kinder to let him die. Pope
‘We just want some peace with our son’
Francis then intervenes, with Charlie later offered treatment at the Vatican hospital. JULY 3 – Donald Trump risks a diplomatic row with the UK by declaring America’s support for saving Charlie. He later tweets he would be ‘delighted’ to help the baby. JULY 7– Charlie wins a third dramatic reprieve after seven international scientists hand doctors new evidence showing his chances of survival were higher than first thought. JULY 10 – Mr Justice Francis dismisses interventions from the Pope and Trump and tells the High Court that only dramatic new evidence could save Charlie – and gives his parents 48 hours to produce it. JULY 13 – Charlie is thrown another lifeline as an American doctor offering to treat him is invited to London by the High Court. JULY 17 – US specialist Dr Michio Hirano flies to London and goes straight to examine Charlie, now 11 months old. JULY 18 – Charlie’s doctors are not persuaded he should not be allowed to die after spending more than five hours with Dr Hirano and an expert from the Pope’s hospital. JULY 21 - Miss Yates shrieks in anguish after hearing for the first time in court that her baby’s latest scan results were ‘very sad’. JULY 23 – Miss Yates and Mr Gard, 32, release a statement condemning the death threats sent to Great Ormond Street staff. Miss Yates says: ‘Despite conflicting issues, we have always had the utmost respect for all the staff who work tirelessly at Great Ormond Street Hospital and the very difficult jobs they do every day.’ JULY 24 – Mr Justice Francis had been scheduled to analyse what Charlie’s parents said was fresh evidence at a two-day hearing in the Family Division of the High Court. But Miss Yates and Mr Gard make the shock decision to give up the fight to keep Charlie alive, saying: ‘Sleep tight our beautiful little boy.’ It is ten days before his first birthday.
The judge also laments social media for giving a platform to users ‘who know almost nothing’. He pours scorn on the ‘absurd notion’ by online commentators that the baby had been a ‘prisoner of the NHS’. JULY 25 – Lawyers representing Charlie’s parents and Great Ormond Street are back in court for a hearing at which the parents say they want to take him home to die. JULY 26 – Charlie’s parents reluctantly admit he should spend his final days in a hospice but remain in dispute with Great Ormond Street over the length of time he should stay there. Great Ormond Street nurses offer to care for him in his final days. Mr Justice Francis says if the parties cannot agree before noon the next day, Charlie will be moved to a hospice and life-support treatment would end soon after. JULY 27 – The High Court rules Charlie will be moved to a hospice and have his life support withdrawn soon afterwards. Charlie is then moved. YESTERDAY – Charlie Gard’s parents announce his death shortly after 6pm.