Critically ill baby Charlie Gard will soon be moved from life support into palliative care, as his parents prepare to say goodbye to their little boy.
Charlie has a very rare and fatal genetic disorder. Recent scans revealed the 11-month-old has also sustained severe brain damage.
Despite raising over $2million AUD to fund US treatment for Charlie’s condition, European and English courts refused to allow the baby to travel overseas.
Charlie’s parents have fought long and hard in an effort to save their son’s life, but this week revealed their battle was now over.
“Time has run out for Charlie,” Grant Armstrong, lawyer for Charlie’s parents Connie Yates and Chris Gard, told England’s High Court in London on Monday.
“It is too late. The damage has been done. It is no longer in Charlie’s best interests to pursue this course of treatment. Dark days lie ahead for (Charlie’s) parents. They wish to treasure their remaining time with Charlie, however short,” Mr Armstrong said.
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Charlie & His Uncle Andy. Charlie could have been your son, grandson, nephew, godchild, this family have been sent Charlie for a reason, because they were the ones who would fight for him and in return he would fight against all odds till his family win that fight. If he's still fighting we're still fighting! #savecharliegard
“Our poor boy”
Charlie’s mum says if her son’s treatment had been handled in a more timely manner, the outcome might have been vastly different.
“Our poor boy has been left to lie in hospital for months without treatment, whilst lengthy court battles have been fought,” Connie said.
“Charlie has been left with his illness to deteriorate devastatingly to the point of no return. We will now have to live with the what-ifs that will haunt us for the rest of our lives.”
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This is who we are fighting for tomorrow. Forget everything else, his life is a stake and there's a chance he can significantly improve with treatment. Charlie needs and deserves the chance to try, like all the other children on this pioneering medication have received a chance of life #savecharliegard
Treatment not possible
Doctors and staff treating Charlie at Great Ormond Street Hospital (GOSH) said that the little boy’s prognosis was dire from the get-go.
While the High Court ruled that Charlie should be allowed to die back in April, GOSH prompted a return to court after his parents’ brought forward new evidence about possible treatment, called NBT.
Recent tests by the US specialist who had offered this treatment revealed that Charlie had extensive and irreversible damage to his body and brain, and that he was not a suitable candidate.
“All aspects of the clinical picture and all of Charlie’s observations indicated that his brain was irreversibly damaged and that NBT was futile,” the hospital said. “NBT may well assist others in the future, (but) it cannot and could not have assisted Charlie.”
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Update: The US Top Expert Doctor in Mitochondrial Diseases will be coming over to see Charlie next week. A clinicians’ meeting will be held on next week, with the US doctor in attendance. This will be attended by Connie and be chaired by an unnamed medical ethics expert. The case will then be heard in full on July 24th and 25th – when the judge will make his decision in the case. We as always thank you for your support it means so much to Charlie's family. #savecharliegard
Outpouring of sympathy
GOSH extended their deepest sympathies to the now-devastated family saying, “the hearts of all at GOSH go out to Connie Yates and Chris Gard.”
“Our staff share the parents’ sadness over Charlie, whom they have cared for with dedication during the months he has spent at Great Ormond Street Hospital.”
“All of GOSH’s thoughts go with Charlie and his mother and father – the hospital wishes each of them peace in their hearts at the end of this day and each day to come.”
The hospital’s staff have endured thousands of abusive messages, critiquing their treatment of baby Charlie. Police were recently called in, in an attempt to prosecute the worst offenders.
Mr Justice Francis, presiding over the case, said “no parent could have done more for their child (and) none of us can begin to understand their agony. The parents now have to face the reality that it is in Charlie’s best interests to die.”
The judge also paid tribute to the the staff who cared for the little boy under difficult circumstances.
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Let's all stand together hand in hand for charlie tomorrow! We don't know how much time Charlie has left! We can't let this happen! We've come so far for him! Look at what you've all achieved for a little boy you've never met! You've helped show the world that this is NOT right! Tomorrow is going to be huge! We promise you sparing a few hours of your time will make a difference!!! Do it for Connie, do it for Chris, do it for Charlie, because one day this could happen to any one of us! DOWNING STREET, 6th July TOMORROW!!!!! #charliesfight #charliesarmy #downingstreet #charliesarmy #charliesfight
Full statement from Charlie’s parents
Connie read a lengthy statement she and Chris had prepared to the court yesterday, offering a heartbreaking insight into her son’s illness and treatment – and the taxing battle that saving his life sparked:
The last 11 nearly 12 months have been the best, the worst and ultimately life changing months of our lives but Charlie is Charlie and we wouldn’t change him for the world. All our efforts have been for him.
This is one of the hardest things that we will ever have to say and we are about to do the hardest thing that we’ll ever have to do which is to let our beautiful little Charlie go.
Put simply, this is about a sweet, gorgeous, innocent little boy who was born with a rare disease, who had a real, genuine chance at life and a family who love him so very dearly and that’s why we fought so hard for him.
We are truly devastated to say that following the most recent MRI scan of Charlie’s muscles, as requested in the recent MDT meeting by Dr Hirano; as Charlie’s devoted and loving parents we have decided that it’s no longer in Charlie’s best interests to pursue treatment and we will let our son go and be with the angels.
The American and Italian team were still willing to treat Charlie after seeing both his recent brain MRI and EEG performed last week. He’s not brain dead (and never has been). He still responds to us, even now, but after reviewing the recent muscle MRI it was considered that Charlie’s muscles have deteriorated to the extent that it is largely irreversible and, were treatment to work, his quality of life would now not be one which we would want for our precious little boy. They both agreed that treatment should have been started sooner.
There is one simple reason for Charlie’s muscles deteriorating to the extent they are in now – TIME. A whole lot of wasted time. Had Charlie been given the treatment sooner he would have had the potential to be a normal, healthy little boy.
His muscles were in pretty good shape in January, although obviously weaker than a child of similar age, and his brain scan was that of a relatively normal child of his age. He may well have had some disabilities later on in life but his quality of life could have been improved greatly.
The reason that treatment was not commenced in January or April this year was that Charlie was found to have ‘irreversible brain damage’ and treatment was considered as ‘futile’. Dr Hirano and [another doctor], together with other internationally renowned paediatric neurologists have now reviewed Charlie’s MRI’s and EEG’s which were performed in January and April respectively and they have confirmed that these MRI’s and EEG’s showed NO actual evidence of irreversible brain damage.
Unfortunately Professor Hirano did not have access to the raw data and he based what he said in April on reports. We did not have access to these second opinions before the initial trial, hence why we are where we are today. Had we had the opportunity to have raw data of the MRIs and EEGs independently reviewed, we are convinced Charlie would be on treatment now and improving all the time.
However, we are now in July and our poor boy has been left to just lie in hospital for months without any treatment whilst lengthy court battles have been fought. We have been told time and time again that Charlie has a ‘progressive disease’ but rather than allow treatment for him with a medication that was widely accepted to have no side effects, Charlie has been left with his illness to deteriorate, sadly, to the point of no return.
We would like to say a few words in the hope that Charlie’s life will not be in vain.
We have always acted in our son’s best interests from the very beginning. We were told back in November that all his organs would fail and it was likely that we only had days left with him but to this day aside from Charlie’s need for ventilation not one organ has ‘failed’.
We have always been led by Charlie. I promise every single one of you that we would not have fought this hard for our son if we thought that he was in pain or suffering.
There has never been any proof that he was and we still don’t think that he’s in pain or suffering to this day. Having said that, we have decided to let our son go and that’s for one reason and one reason only. It is because the prospect of improvement is unfortunately now too low for Charlie.
Our doctors in America and Italy were still willing to treat Charlie after reviewing the MRI head scan from July 2017 as they still felt that there was a chance of meaningful improvement in Charlie’s brain. However, due to the deterioration in his muscles, there is now no way back for Charlie. Time that has been wasted. It is time that has sadly gone against him.
We now have 7 experts supporting therapy for Charlie’s condition which I think is proof that it was more than reasonable to try it. Nucleosides are simply a powder that would’ve gone into Charlie’s milk and are compounds which all of us in this room produce naturally.
Unfortunately, Charlie can’t produce these due to his disease, which is why he is the way he is. We want people to realise that we have been speaking to parents whose children were just like Charlie before starting treatment and now some of them are walking around like normal children. We wanted Charlie to have that chance too.
Our son has an extremely rare disease for which there is no accepted cure but that does not mean that this treatment would not have worked, and it certainly does not mean that this shouldn’t have been tried. We have only been asking for a 3 month trial of treatment to see if there was any improvement.
We have been asking for this short trial for the past 8 months. Charlie did have a real chance of getting better if only therapy was started sooner. It was never false hope as confirmed by many experts.
Now we will never know what would have happened if he got treatment but it’s not about us. It’s never been about us. It’s about what’s best for Charlie now. At the point in time when it has become too late for Charlie we have made the agonising decision to let him go.
This has also never been about ‘parents know best’. We have continuously listened to experts in this field and it has raised fundamental issues, ethically, legally and medically – this is why the story of one little boy from two normal everyday people has raised such conflicting opinions and ferocious arguments worldwide.
All we wanted to do was take Charlie from one world renowned hospital to another world renowned hospital in the attempt to save his life and to be treated by the world leader in mitochondrial disease. We feel that we should have been trusted as parents to do so but we will always know in our hearts that we did the very best for Charlie and I hope that he is proud of us for fighting his corner.
We will have to live with the ‘what if’s’ which will haunt us for the rest of our lives but we’re thinking about what’s best for our son. We have always believed that Charlie deserved a chance at life and we knew that his brain was not as bad it was made out to be and that’s why we continued.
We completely understand that everyone is entitled to their opinion and this was always going to be a matter which would cause a huge debate in who’s right and who’s wrong. In truth, there are no winners here.
One thing is for sure though. We know deep within our hearts that we have always had Charlie’s best interests in the forefront of our minds and despite what some people think of us, we will try to walk away from this with our heads held high. As I said, we know the truth, and in our hearts we know that we have done all of this for our darling little Charlie. We have never done this for selfish reasons. We didn’t keep him alive just because we couldn’t bear to lose him.
Charlie had a real chance of getting better. It’s now unfortunately too late for him but it’s not too late for others with this horrible disease and other diseases. We will continue to help and support families of ill children and try and make Charlie live on in the lives of others. We owe it to him to not let his life be in vain.
We would like to thank our current legal team who have worked tirelessly to try and save Charlie’s life and they have not asked for a single penny. They won’t even let us buy them a coffee. They have done it out of the kindness of their hearts because they believed in us and they certainly believed in Charlie.
We would like to thank everybody who has supported us throughout this journey in this country and thousands of people worldwide and we also would like to thank the staff at GOSH who have looked after Charlie and kept him comfortable and stable for so long. The care he has received from the nurses who’ve cared for him has been second to none. But most of all, we would like to thank Charlie for the joy he has brought to our lives. The love we have for you is too much for words and we love you so very much.
Despite the way that our beautiful son has been spoken about sometimes, as if he not worthy of a chance at life, our son is an absolute WARRIOR and we could not be prouder of him and we will miss him terribly. One little boy has brought the world together and whatever people’s opinions are, no one can deny the impact our beautiful son has had on the world and his legacy will never ever die.
Charlie has had a greater impact on and touched more people in this world in his 11 months than many people do in a life time. We could not have more love and pride for our beautiful boy.
His body, heart and soul may soon be gone, but his spirit will live on for eternity and he will make a difference to people’s lives for years to come.
As his mum and dad, we will make sure of that. We owe that to our boy. We will do our utmost to ensure that no parents have to go through what we have been through and the next Charlie that comes along WILL get this medicine before it’s too late and Charlie will save many more lives in the future, no doubt about that.
We are struggling to find any comfort or peace with all this, but one thing that does give us the slightest bit of comfort, is that we truly believe that Charlie may have been too special for this cruel world.
We are now going to spend our last precious moments with our son Charlie, who unfortunately won’t make his 1st birthday in just under 2 weeks’ time, and we would ask that our privacy is respected at this very difficult time.
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.
Sweet dreams baby. Sleep tight our beautiful little boy.
Charlie Matthew William Gard