The end of the road for Charlie Gard. What a disgraceful episode.

I heard on the news today that a judge will decide whether Charlie Gard's parents will be allowed to take him home to die.

Yet again, a judge will be making a decision and not Charlie's parents and this has been the case right from the start and the good old British public accept it all without question. 

I'm really pissed off about this whole thing but I seem to be in the minority and this pisses me off even more. Instead of me starting a textual rant on Steemit, I recommend that you read the articles @richq11 has written on the subject in which he details the case and manages to put my opinion on the matter across far better than I can.

https://steemit.com/life/@richq11/the-plight-of-charlie-gard

https://steemit.com/life/@richq11/hail-britannia-vanguard-of-the-nwo-an-update-on-charlie-gard

Anyway, now that you are familiar with the case here is a statement released by Charlies parents. I won't make any comments on it as I think the parents say it all with dignity and respect which is more than I think I would be able to do if I were in their situation. Anyway here is their statement which can be found at http://www.charliesfight.org/

This statement has been written by both Chris and I

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 ewhich  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 that of 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 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 orApril 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 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 sons 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 and kept him alive  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 truly believe that any parent would have wanted the same thing, if they knew what we knew.

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. We had the  chance but we weren’t allowed to give you that chance. 

Sweet dreams baby. Sleep tight our beautiful little boy. 

Charlie Matthew William Gard

Our hero!