Charlie Gard’s parents said today they have followed the tragic case of Alfie Evans with ‘heavy hearts’ and demanded a law change to give parents more power to decide on their child’s care.
Chris Gard and Connie Yates’ little boy died after his life support was switched off against their will on July 28 last year, shortly before his first birthday.
Toddler Alfie Evans is still alive almost four days since his ventilator was removed against the wishes of his parents Tom Evans, 21, and Kate James, 20.
Ms Yates said today: ‘With heavy hearts we have watched as Alfie’s case has unfolded. For those who have not been in a situation like this, it is impossible to understand the pain Tom and Kate are going through’.
Charlie Gard’s parents have expressed their sympathy and support for the parents of Alfie Evans as they called for a change in the law
Supporters shared this photo of mother Kate James cradling her son Alfie at Alder Hey Hospital in Liverpool, where doctors have withdrawn life support. He is still alive more than 72 hours later
Charlie’s fight for life echoes Alfie’s battle because both families were involved in a lengthy court battle because doctors believed it was in the child’s ‘best interests’ to die.
Charlie, who had a rare mitochondrial disease, also had his own ‘army’ of thousands of supporters, which included Pope Francis and Donald Trump.
Since his death Charlie’s parents have supported other families in similar circumstances, including the parents of Alfie Evans, whose son is fighting for life in Alder Hey hospital, Liverpool.
Speaking today Ms Yates again called for the law to be changed to make the so-called ‘best interests’ test for poorly children fairer and more transparent for parents.
She said: ‘When we were fighting for our son, Charlie Gard to be given a chance to try a treatment that could have improved his quality of life, we realised that cases like these would keep happening until the law was changed. Tragically, this has proven to be true’.
Alfie’s parents have long argued that doctors should not have the final say on their son’s care, they should.
An emotional Tom Evans asked Alfie’s Army to stand down last night as the family try to build bridges with Alder Hey and get their son home
Alfie Evans, pictured with his parents Tom and Kate, is fighting for life in Alder Hey hospital, Liverpool
Connie said: ‘Since Charlie’s passing in July last year, we have been working with paediatric consultants, medical ethicists, senior lawyers, U.K. politicians and other parents who have suffered through similar situations as us, to try and propose a law that will prevent parents experiencing painful and prolonged conflicts with medical professionals.
‘This involves addressing problems around the ‘best interests’ test as well as creating a platform for transparency and openness so that cases like these can be dealt with before they ever reach the courts. We were calling this ‘Charlie’s Law’ whilst also working on the foundation set up in his memory.
‘Once cases are public it is difficult for people to be fully aware of the complexities and this often leads to illinformed judgements on both sides and creates unnecessary conflicts.
‘We have something that is better for everybody – hospitals, healthcare professionals, families with sick children, the NHS, and the reputation of our own government. We would ask those pushing for law change to take account of the careful work already done, and join us as we continue to push for a solution that is best for all involved’.
Alfie Evans’ ‘Army’ of supporters have abandoned protests outside Alder Hey – but left their banners, flags and balloons – as his family said today they want to take him home in the next day or two to live, not die.
The much-loved little boy is still alive inside the Liverpool hospital more than 72 hours after his life support was withdrawn.
The toddler’s parents Tom Evans, 21, and Kate James, 20, insist their son could survive for ‘months or years’ as they dramatically abandoned their fight to take him abroad for treatment and pledged to work with doctors in a bid to take him home.
But Alfie’s family have reacted with fury to claims that their attempt to ‘build bridges’ with Alder Hey meant they were accepting he is about to pass away.
Mr Evans’ brother Daniel said last night: ‘Thomas and Kate are not “preparing themselves for their son’s death” in no way shape or form, to get him home is their priority and that’s what they plan to do with the help of Alder Hey’.
He added: ‘Alfie is doing good, 72 hours independent breathing!!’
Alfie’s supporters have spent weeks outside Alder Hey but they have heeded the warning and stayed away today, but their balloons and flags remain
Tom’s brother Daniel has said Alfie’s parents believe their don is coming home to live, not die
Tom Evans also had a message for the tens of thousands in ‘Alfie’s Army’ as he asked them to stand down ‘if this is what it takes to get our son home’.
He said: ‘Please respect this. You have all been the most crucial part of our fight and we love you all’.
Until last night, Mr Evans and Miss James were desperate to fly him to a hospital in the Vatican – but now accept their best hope of leaving Alder Hey is getting him home.
Mr Evans said the ‘warrior’ toddler’s mother has been keeping him alive with cuddles.
He said: ‘Alfie’s fought through the night the last two nights because he’s been lying on Kate’s chest non-stop. And him and his mum have become closer now more than ever before’.
A military helicopter had been put on standby at the request of the Pope, who met Mr Evans last week.
But on Tuesday a High Court judge again refused the couple permission to take Alfie to Rome and his decision was upheld by the Court of Appeal the following day.
After a meeting with doctors, Mr Evans said he and Kate James, 20, and the hospital in Liverpool wanted privacy in order to ‘form a relationship, build a bridge and walk across it’.
‘In Alfie’s interests we will work with his treating team on a plan that provides our boy with the dignity and comfort he needs,’ he said.
The comments marked a huge sea change in the couple’s attitude to medics, whom Mr Evans had previously threatened to prosecute for conspiring to murder his 23-month-old son.
Earlier yesterday he had said doctors were treating him and Miss James like criminals.
Mr Evans, who wants three of his doctors prosecuted for conspiracy to murder, said: ‘They hate us. They don’t like us because I’ve fought against them for so long and I’m right’.
He added: ‘We’re not like them. We walk around the corridors and they pop into other cubicles to avoid us. They give us some horrible smug look as if we’re in the wrong. It’s like we’re criminals and we’re being looked down on’.
Alfie, with his father sleeping in the background, is still fighting, his family say, despite a lack of a ventilator
Mr Evans made a plea for supporters to stop their protests in the hope it will convince doctors to let Alfie leave
But by 6pm the couple had apparently decided to work with medics, thanking both supporters and hospital staff – many of whom have been the targets of abuse – and said they would not be making any more public comments.
‘Our lives have been turned upside down by the intense focus on Alfie and his situation,’ Mr Evans said.
‘Our little family, along with Alder Hey, has become the centre of attention for many people around the world and it has meant we have not been able to live our lives as we would like.
‘We are very grateful and we appreciate all the support we have received from around the world… (but) we would now ask you to return back to your everyday lives and allow myself, Kate and Alder Hey to form a relationship, build a bridge and walk across it.
‘We also wish to thank Alder Hey staff at every level for their dignity and professionalism during what must be an incredibly difficult time for them too.’
Mr Evans’s comments came as protests and vigils were held in Poland, Ireland and the Vatican for Alfie, who was taken off life-support on Monday following a drawn-out legal battle.
Doctors say he has a degenerative, incurable neurological condition, is in a deep coma and it is in his best interests to let him die.
High Court judge Mr Justice Hayden urged the parents to disregard the advice of ‘pro-life’ campaigners who he accused of manipulating them and to spend what precious time they had left with their son.
People hold candles as they gather to attend a prayer vigil for terminally ill toddler Alfie Evans
Another candlelit vigil in support of Alfie Evans took place in front of the Great Britain embassy building in Warsaw
Alfie’s Army have also gathered outside Liverpool including here at Belfast city Hall to voice their support for the child
He slammed the ‘malign hand’ of Pavel Stroilov, who works for the Christian Legal Centre (CLC), and called him a ‘fanatical and deluded’ man whose advice had come ‘perilously close’ to contempt of court.
The couple apparently agreed with the judge, who said their only option was to work with medics to try to move Alfie from intensive care – either onto a normal ward, a hospice or home – for his final days.
It came as health chiefs warned hospital staff to hide their uniforms due to threats directed at them after Alfie’s case.
It came after a ‘sick’ and ‘psychotic’ minority of Alfie Evans’ supporters threatened to ‘burn down’ Alder Hey and wished harm on doctors as it was revealed police are ready to arrest the trolls.
For more information on the Charlie Gard Foundation click HERE