The last 11, nearly 12, months have been the best, the worst and ultimately most 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 [multidisciplinary team meeting of those caring for Charlie] 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.
There is one simple reason for Charlie’s muscles deteriorating to the extent they are in now – time. A whole lot of wasted time.
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 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 has been wasted. It is time that has sadly gone against him.
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.
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 ifs”, 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 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 Great Ormond Street hospital who have looked after Charlie and kept him comfortable and stable for so long. The care he has received from the nurses who have 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 were not worthy of a chance at life, our son is an absolute warrior. 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 lifetime. We could not have more love and pride for our beautiful boy.
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.
Connie Yates’ statement has been edited and condensed.
