The ongoing legal fight for Charlie Gard’s life has come to an end. Parents of the terminally-ill British baby, Chris Gard and Connie Yates, made an announcement before High Court judge Nicholas Francis and a packed-full court room Monday morning, saying “it’s too late” for their son.
In an official statement written by both Chris and Connie, the couple explains in detail why they’ve refused to give up, and what led them to this decision now:
“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.
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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 Dr Bertini, together with other internationally renowned pediatric 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.
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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.
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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 realize 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.
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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 agonizing 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.