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Yesterday his breathing tube was withdrawn at a hospice.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’.
‘We just want some peace with our son’