Eleven-month-old Charlie Gard, whose short life captured the hearts of the world, has died a week before his first birthday.
Charlie suffered from a rare genetic condition which saw him in hospital for the majority of his short life.
His parents, Connie Yates and Chris Gard, fought a lengthy and emotional legal battle to take their severely ill baby son to the US for treatment, but were denied by judges.
Charlie’s mother, Connie, said tonight: ‘Our beautiful little boy has gone, we are so proud of you.’
Yesterday courts denied his parents the chance to bring their son home to die and he was taken from Great Ormond Street to a hospice.
A spokesman said: ‘Everyone at Great Ormond Street Hospital sends their heartfelt condolences to Charlie’s parents and loved-ones at this very sad time.’
Charlie’s plight has seen hundreds of supporters – called Charlie’s Army – lending their voices and money to see the child given treatment, with £1.35 million raised on an online fund-raising site.
Pope Francis and US president Donald Trump weighed into the debate, with the Vatican saying the pontiff prayed for ‘their wish to accompany and treat their child until the end is not neglected’.
A picture of health. For the first few weeks Charlie seemed a normal baby, but then Connie noticed something was not right and the nightmare began
Chris Gard kisses Connie Yates’ bump in 2016 as the couple looked forward to the birth of their first child Charlie
Charlie is born on August 4 and is soon happily snuggling up to Dad — whose eyes are red from shedding tears of joy
The couple, of Bedfont, west London, ended their legal battle on July 24. Connie is pictured with Charlie in the intensive care at GOSH on March 10
The protracted legal battle saw the couple take their case to the High Court, Court of Appeal and Supreme Court – all of which ruled life support treatment should end and Charlie should be allowed to die with dignity.
Judges at the European Court of Human Rights refused to intervene in the case – and the couple said they had been denied their final wish to be able to take their son home to die and felt ‘let down’ following the lengthy legal battle.
The couple, of Bedfont, west London, ended their legal battle on July 24, in what they called the ‘most painful of decisions’ and their son was moved to a hospice on July 27 .
Mr Gard gave an emotional speech on the steps of the High Court when he said: ‘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.
‘We had the chance but we weren’t allowed to give you that chance. Sweet dreams baby. Sleep tight our beautiful little boy.’
Charlie, who was born on August 4 last year, has a form of mitochondrial disease, a condition that causes progressive muscle weakness and brain damage.
Described as ‘perfectly healthy’ when he was born, Charlie was admitted to hospital at eight weeks and his condition has progressively deteriorated.
The couple, from Bedfont, west London, ended their legal battle on July 24, in what they called the ‘most painful of decisions’
Connie Yates and Chris Gard fought a lengthy and emotional legal battle to take their severely ill baby son to the US for treatment. Charlie is pictured in GOSH ready with his passport.
Little Charlie’s face lights up with wonder as he stares up at Chris, who looks at his baby son with that mixture of pride and love all new parents know
At the time Charlie’s parents said they believed their son might have been saved if experimental therapy had been tried sooner.
Ms Yates said time was ‘wasted’, adding ‘had Charlie been given the treatment sooner he would have had the potential to be a normal, healthy little boy.’
Doctors at GOSH did not agree, with lawyers representing the hospital saying the ‘clinical picture’ six months ago had shown irreversible damage to Charlie’s brain.
They said the ‘unstoppable effects’ of Charlie’s rare illness had become plainer as weeks passed.
Following news of Charlie’s death, US Vice President Mike 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.’
The couple said they wanted to take their son across the Atlantic for nucleoside bypass therapy, but specialists at Great Ormond Street Hospital in London, said the treatment was experimental and would not help.
The couple said they wanted to take their son across the Atlantic for nucleoside bypass therapy, but experts said the treatment was experimental
The couple paid tribute to their ‘absolute warrior’ less than a fortnight before his first birthday on the steps of the High Court
Connie and Chris had asked for up to a week with their son before letting him ‘slip away’ before his first birthday next Friday
The couple paid tribute to their ‘absolute warrior’ less than a fortnight before his first birthday on the steps of the High Court, with father Chris saying: ‘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.
‘We had the chance but we weren’t allowed to give you that chance. Sweet dreams baby. Sleep tight our beautiful little boy.’
Charlie’s parents added they believed their son might have been saved if experimental therapy had been tried sooner.
Ms Yates said time had been ‘wasted’, adding ‘had Charlie been given the treatment sooner he would have had had the potential to be a normal, healthy little boy.’
Doctors at Great Ormond Street did not agree, with lawyers representing the hospital saying the ‘clinical picture’ six months ago had shown irreversible damage to Charlie’s brain.
They said the ‘unstoppable effects’ of Charlie’s rare illness had become plainer as weeks passed.
Charlie’s parents said they believed their son might have been saved if experimental therapy had been tried sooner. They celebrated his two-week birthday in August last year
This poignant footage shows Charlie Gard in the weeks before it emerged he was suffering from a devastating illness
WHAT IS MITOCHONDRIAL DNA DEPLETION SYNDROME?
The syndrome is an inherited disease which starts to show symptoms in infancy.
Most patients are born after a normal pregnancy and appear healthy at birth.
Symptoms usually begin to appear in the first few months of life.
It causes progressive muscle weakness, decreased muscle tone and kidney problems.
It also causes patients to lose motor skills such as standing, walking, eating and talking.
Eventually the muscles that control breathing become weak and respiratory failure is the most common cause of death.
Intelligence is not usually affected.
Children with severe forms of the condition usually survive for less than a year.
It is not yet fully understood what causes the condition but both parents of the child have to carry the gene mutation.
It is recessive meaning a child has a 25 per cent chance of suffering from the disease if both their parents carry the mutation.
Connie and Chris had asked for up to a week with their son before letting him ‘slip away’ before his first birthday next Friday.
Great Ormond Street Hospital (GOSH) said last night ‘we have tried absolutely everything’ to accommodate the parents’ but will not risk an ‘unplanned and chaotic end to Charlie’s life’.
His mother Connie has hit back and insisted doctors ‘denied us our final wish’.
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.
‘Most people won’t ever have to go through what we have been through, we’ve had no control over our son’s life and no control over our son’s death.
‘I’m shocked that after all we’ve been through, they won’t allow us this extra time.’
On Wednesday Mr Justice Francis sided with his doctors and said Charlie would be taken to the hospice in a secret location where doctors will stop life-support treatment shortly after he arrives because they say extending his life will only cause him more pain.
The irrevocable court ruling came as home videos emerged showing Charlie as a newborn – weeks before his illness was diagnosed. The tiny baby is seen grasping at a two-week birthday card on a changing mat at his parents’ flat in west London, last August.
Charlie’s move to the hospice was kept secret until today.
GOSH has said it had ‘tried absolutely everything’ to accommodate the couple’s wishes, but ‘the risk of an unplanned and chaotic end to Charlie’s life is an unthinkable outcome for all concerned and would rob his parents of precious last moments with him’.
The statement concluded: ‘Our thoughts and deepest sympathies go out to Chris and Connie, and we hope that their privacy is respected at this devastating time for their family.’
Mr Justice Francis drew five months of litigation to a close by making the order, which saw Charlie leave the London hospital where he has been cared for since late 2016, and move to a hospice.
The hospital statement added: ‘We deeply regret that profound and heartfelt differences between Charlie’s doctors and his parents have had to be played out in court over such a protracted period.
The statement said it had been a ‘distressing process for all concerned’, adding that nobody could fault Charlie’s parents for tirelessly advocating ‘for what they sincerely believed was right for their son’.
The judge did not reveal when Charlie will move and has said the hospice cannot be identified in media reports.
‘Nobody can fault Charlie’s devoted parents’: Great Ormond Street on the ‘uniquely painful’ end
Great Ormond Street said hospital doctors ‘deeply regretted’ the way the case played out in court
Yesterday Charlie’s parents were refused their request to take their son home to die and the 11-month-old was taken to a hospice in a secret location.
Great Ormond Street said hospital doctors ‘deeply regretted’ the way the case played out in court.
A spokesman for the hospital said medics there ‘get up every morning to care for sick children, not to cause further anguish to devoted parents like Chris and Connie’.
The statement comes as Charlie’s parents were told it would not be impossible for them to take their son home to die.
A Great Ormond Street Hospital spokesman said: ‘We deeply regret that profound and heartfelt differences between Charlie’s doctors and his parents have had to be played out in court over such a protracted period.
‘It has been a uniquely painful and distressing process for all concerned.
‘Charlie’s parents have tirelessly advocated for what they sincerely believed was right for their son, and nobody could fault them for doing so.
‘All of us at Great Ormond Street Hospital get up every morning to care for sick children, not to cause further anguish to devoted parents like Chris and Connie.
‘We have tried absolutely everything to accommodate their final wishes and engaged not only with those who volunteered to treat Charlie but experts from across the health service in close consultation with the NHS to make this happen.
‘This included exploring the unprecedented step of delivering intensive life support away from a hospital intensive care unit.
‘Sadly, as the judge has now ruled, there is simply no way that Charlie, a patient with such severe and complex needs, can spend any significant time outside of an intensive care environment safely.
‘The risk of an unplanned and chaotic end to Charlie’s life is an unthinkable outcome for all concerned and would rob his parents of precious last moments with him.
‘As the judge has now ruled, we will arrange for Charlie to be transferred to a specialist children’s hospice, whose remarkable and compassionate staff will support his family at this impossible time.
‘This is a very special place who will do all they can to make these last moments as comfortable and peaceful as possible for Charlie and his loved-ones.
‘Great Ormond Street Hospital would like to reassure everyone who has followed this heart-breaking story that we always puts the best interests of every single one of our patients above all else.
‘While we always respect parents’ views, we will never do anything that could cause our patients unnecessary and prolonged suffering.
‘The priority of our medical staff has always been Charlie.
‘Our doctors and nurses have worked tirelessly and done their utmost for him in the months he has been in our care.
‘Every single one of us wishes there could have been a less tragic outcome.
‘Our thoughts and deepest sympathies go out to Chris and Connie, and we hope that their privacy is respected at this devastating time for their family.
September and the diagnosis is devastating: a rare strain of mitochondrial depletion syndrome, one of only 16 known cases – he was in hospital at eight weeks
As lawyers and doctors continue to argue, devastated Connie is left to face the fact that she may have to let Charlie go
Charlie Gard and his parents ‘having a picnic’ on the roof at Great Ormond Street Hospital as he enjoys rare outdoor time
As summer 2017 arrives, there is a brief reprieve for Charlie as scientists come up with new evidence and the High Court invites American specialist Dr Michio Hirano to examine him
But final scans show there is no hope. Chris and Connie give up their battle in court. ‘A window of opportunity has been missed,’ says their lawyer
The last picture, taken on July 14. ‘We will let our son go and be with the angels,’ said Charlie’s parents in a moving statement as they accepted they would
CHARLIE GARD: A YEAR OF TORMENT AND COURT BATTLES
Connie Yates and Chris Gard announced their son Charlie’s death on July 28
The plight of terminally-ill Charlie Gard drew international sympathy and saw interventions from the Pope and US president Donald Trump.
After a five-month legal battle, Charlie’s parents, Chris Gard and Connie Yates, ended their legal fight over treatment for their baby son and he was taken to a hospice.
They announced his death on Friday, July 28.
Here are the key events in the story of the 11-month-old:
- August 4 2016 – Charlie Gard is born a ”perfectly healthy” baby at full term and at a ”healthy weight”.
- September 2016 – Charlie’s parents notice that he is less able to lift his head and support himself than other babies of a similar age. Doctors discover that he has a rare inherited disease – infantile onset encephalomyopathy mitochondrial DNA depletion syndrome (MDDS).
- October 2016 – Charlie has become lethargic and his breathing is shallow and he is transferred to the Great Ormond Street Hospital for Children in London on October 11.
- December 2016 – Charlie spends his first Christmas in hospital with his parents putting a festive bib on the youngster and sharing a picture captioned ”our little elf”.
- January 2017 – A crowd-funding page is set up to help finance trial therapy in the United States.
- March 3 2017 – Great Ormond Street bosses ask Mr Justice Francis to rule that life-support treatment should stop.
- April 11 – Mr Justice Francis says doctors can stop providing life-support treatment after analysing the case at a hearing in the Family Division of the High Court in London.
- May 3 – Charlie’s parents ask Court of Appeal judges to consider the case.
- May 23 – Three Court of Appeal judges analyse the case and dismiss the couple’s appeal two days later.
- June 8 – Charlie’s parents lose fight in the Supreme Court – his mother screams as justices announce their decision.
- June 20 – Judges in the European Court of Human Rights start to analyse the case after lawyers representing Charlie’s parents make written submissions.
- June 27 – European court judges refuse to intervene. A Great Ormond Street spokeswoman says the European Court decision marks ”the end” of a ”difficult process”. She says there will be ”no rush” to change Charlie’s care and says there will be ”careful planning and discussion”.
- June 29 – Charlie’s parents say his life-support will be switched off on Friday June 30.
- June 30 – They say GOSH has agreed to ”give us a little bit more time” with Charlie. They ask for privacy ”while we prepare to say the final goodbye”.
- July 2 – Pope Francis calls for the couple to be allowed to ”accompany and treat their child until the end”, saying he has followed the case with ”affection and sadness”.
- July 3 – US president Donald Trump intervenes, 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.”
- July 4 – Bambino Gesu, the Vatican’s children’s hospital in Rome, offers to take Charlie in.
- July 10 – Charlie’s parents return to the High Court and ask Mr Justice Francis to carry out a fresh analysis of the case. Mr Justice Francis says he will consider any new evidence.
- July 17 – Michio Hirano, the New York neurology professor who offered to treat Charlie, travels to London to examine the little boy, discuss the case with Great Ormond Street doctors and other clinicians and examine fresh scans.
- July 21 – Lawyer representing Great Ormond Street says a new scan makes for ”sad reading”.
- July 22 – Great Ormond Street chairwoman Mary MacLeod says doctors and nurses have been subjected to abuse in the street and received thousands of threatening messages in recent weeks.
- July 24 – Charlie’s parents announce their decision to end their legal fight, saying: ‘We are sorry we could not save you.’ Mr Justice Francis had been scheduled to analyse what his parents said was fresh evidence at a hearing in the Family Division of the High Court. But as the hearing got under way, the family’s barrister Grant Armstrong told the judge: ‘This case is now about time. Sadly time has run out.’
- July 25 – Lawyers representing Charlie’s parents and Great Ormond Street Hospital are back in court for a hearing at which the parents’ wish to take their son home to die was discussed.
- July 26 – Charlie’s parents decide he should spend his final days in a hospice but remain in dispute with Great Ormond Street Hospital over the length of time he should stay there. Mr Justice Francis says if the parties cannot agree before noon the next day, Charlie would be moved to a hospice and life-support treatment would end soon after.
- July 27 – An order issued by court officials and drawn up by Mr Justice Francis sets out arrangements for Charlie’s final hours. The plan will see him move to a hospice, where life-support treatment will be withdrawn soon after.
The little boy who touched the world: How Charlie Gard’s battle drew love from across the planet with support from US President Trump and the Pope
By Abe Hawken
Charlie was just the 16th person in the world to be diagnosed with mitochondrial DNA depletion syndrome
Charlie Gard was born a ‘perfectly healthy’ baby on August 4 last year.
His loving parents Chris Gard, 32, and Connie Yates, 31, took him home in Bedfont, west London, to celebrate the birth of their first child.
But what happened next captured the hearts of people across the world as the brave couple initiated a tense and lengthy legal battle regarding their son’s life.
At just one month old, Charlie’s parents noticed he struggled to lift his head and support himself like other children his age.
Just a few weeks later, their son was diagnosed with a rare genetic condition when he began to lose weight.
He became just the 16th person in the world to be diagnosed with mitochondrial DNA depletion syndrome, which causes progressive muscle weakness and brain damage.
Charlie was transferred to the Great Ormond Street Hospital in London and his parents launched a desperate bid to save their son’s life.
Doctors there said they wanted the boy, who was then 10 months old, to be able to ‘die with dignity’ and his mother quickly found an American doctor who was willing to offer her son a trial therapy.
Mr Gard and Ms Yates began a crowd funding campaign to help finance the US treatment in January, however, the hospital – where he was staying – suggested that experimental treatment in the US would not work.
They advised switching off his life support but Charlie’s parents started a long and tense legal process which went on for the best part of two months.
But it ended on June 27 when judges in the European Court of Human Rights refused to overturn a ruling to switch Charlie’s life support off.
Doctors there said they wanted the boy, who was then 10 months old, to be able to ‘die with dignity’ but his mother quickly found an American doctor who was willing to offer her son a trial therapy
This was Mr Gard and Ms Yates’ final appeal and they were said to be ‘utterly distraught’ when the verdict was announced in Strasbourg, France.
The decision came after Charlie’s parents made a number of emotional appeals urging the public to help them fight for their son’s life.
While he was being treated in hospital, they raised a staggering £1.4million thanks to the help of those who were known as the so-called ‘Charlie’s Army’.
On April 11, the judge ruled that doctors were permitted to switch the machines off, to which Charlie’s heartbroken mother screamed ‘no’ when the verdict was announced
The money they raised – which was thanks to donations from around the world – was enough for Charlie to travel by air ambulance and to cover the cost of the experimental treatment.
The legal process began on April 3 when a judge in London’s High Court started to consider whether Charlie’s life support machines should be turned off and whether he should be allowed to go the US for treatment.
On April 11, the judge ruled that doctors were permitted to switch the machines off, to which Charlie’s heartbroken mother screamed ‘no’ when the verdict was announced.
Despite a petition calling on the Prime Minister to release the boy from hospital being signed by 110,000 people three judges at the Court of Appeal upheld the High Court’s ruling on May 25.
And in a last-ditch attempt to overturn the ruling in the UK, they took the case to the Supreme Court.
But on June 8 three justices rejected their fresh challenge and his mother vowed to take it the European courts after saying: ‘How can they do this to us?’
Judges in the ECHR agreed Charlie’s life support should be kept on until Monday, June 19 so they could consider the case.
But on June 27, they rejected a plea to intervene in the case.
His parents had to deal with fresh heartbreak when they were told their son’s life support machine would be switched off imminently.
However, they won more time so they could say goodbye to their dying son so they could ‘create precious memories’.
Pope Francis even helped them get the additional time when the Vatican said it was ‘never’ right to deliberately end a human life and added: ‘Dear Charlie… we are praying for you.’
‘I entrust little Charlie to the Father’: Pope sends prayers to Gard’s grieving parents four weeks after he joined religious campaigners trying keep the 11-month-old on life support
By Iain Burns
Mr Gard and Miss Yates are pictured at the Great Ormond Street Chapel. On July 3, the Pediatric Hospital Bambino Gesu, known as the ‘Pope’s Hospital’ which sits close to the Vatican’s walls, offered to treat Charlie
Pope Francis has led tributes to baby Charlie Gard after he died earlier tonight.
As thousands of people took to social media to pay their respects, the Pope wrote that he entrusted ‘little Charlie to the Father’ and prayed for ‘his parents and all those who loved him’.
Pope Francis became involved in the case on July 2 when he called for the couple to be allowed to ‘accompany and treat their child until the end’.
He said then that he had been following Charlie’s struggle with ‘affection and sadness’.
The Pope later tweeted: ‘To defend human life, above all when it is wounded by illness, is a duty of love that God entrusts to all.’
On July 4 Mariella Enoc, president of the Vatican’s Bambino Gesu hospital, offered to take Charlie in for treatment.
She said the clinic had reached out to Great Ormond Street Hospital about taking over care for the boy.
Enoc said in a statement at the time: ‘We know that it is a desperate case and that there are no effective therapies.
‘We are close to the parents in prayer and, if this is their desire, willing to take their child, for the time he has left to live.’
Charlie’s case became a focal point for many religious groups.
Pro-life US Christian pastor Patrick Mahoney was one of many to take on the cause.
He flew to London and began leading public prayers outside of Great Ormond Street Hospital.
Pope Francis said he entrusted Charlie to ‘the Father’ and is praying for his parents
The Pope previously tweeted: ‘To defend human life, above all when it is wounded by illness, is a duty of love that God entrusts to all’
Politicians and celebrities from around the world added their condolences.
Earlier today Vice President Pence wrote that he was ‘saddened’ to hear of Charlie’s death.
He added: ‘Karen [Mr Pence’s wife] & I offer our prayers & condolences to his loving parents during this difficult time’.
President Donald Trump had tweeted his support earlier this month, writing: ‘If we can help little #CharlieGard, as per our friends in the U.K. and the Pope, we would be delighted to do so.’
Onetime boxing champion Frank Bruno, meanwhile, said his thoughts are with Charlie’s family.
He tweeted: ‘This has been a very difficult journey and no one will hurt more than his parents’.
US Vice President Mike Pence said he and his wife Karen were offering ‘prayers’ and ‘condolences’ to the parents of young Charlie after his death
Onetime boxing champion Frank Bruno said ‘no one will hurt more’ than Connie Yates and Chris Gard after their son’s death
Former UKIP leader Nigel Farage, meanwhile, simply said he was ‘desperately sorry’ for Charlie’s parents
Sam Bailey, who won X Factor in 2013, said ‘Heaven has gained the most precious little prince’
Commentator Pier Morgan called Charlie a ‘brave little boy’
Former Manchester United and Aston Villa defender Paul McGrath said Charlie was a ‘little fighter’
Another footballer, former Newcastle United forward Tino Asprilla, said Charlie’s death was a ‘shame’
Former UKIP leader NIgel Farage wrote that he was ‘desperately sorry’ for Charlie’s parents.
Other public figures offering their condolences included X Factor winner Sam Bailey, commentator Piers Morgan and former Manchester United footballer Paul McGrath.
Paul McGrath called Charlie a ‘little fighter’, while Pier Morgan said he was a ‘brave little boy who touched the world’.
Sam Bailey called him a ‘precious little prince’.