Charlie Gard’s mum Connie Yates pays tribute to her tiny warrior in heartfelt statement read out in High Court
HERE is the statement written by Connie Yates, which was yesterday read to the High Court . . .
"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 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 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 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 treatment was not commenced in January or April 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 MRIs and EEGs, which were performed in January and April respectively, and they have confirmed that these showed no actual evidence of irreversible brain damage.
"Unfortunately, Dr Hirano did not have access to the raw data and 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 the opportunity to have raw data of the MRIs and EEGs independently reviewed, we’re convinced Charlie would be on treatment now and improving all the time.
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"However, we are now in July and our poor boy has been left to just lie in hospital for months without any treatment while lengthy court battles have been fought.
"We have been told time and again 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”.
Charlie Gard's condition and his story so far
Charlie Gard is in the “terminal stages” of a disease called mitochondrial DNA depletion syndrome, after both of his parents were unknowingly carrying the faulty gene.
Sufferers of the condition do not get energy to their muscles, kidneys and brain, and is typically fatal in infancy and early childhood.
The 11-month-old is said to be one of only 16 people to have ever had the condition and his desperate mum and dad have been unable to find a treatment in the UK for him.
They raised £1.3million to send him America for treatment but doctors at Great Ormond Street Hospital said Charlie should be allowed to die in dignity and applied for permission to have his ventilator switched off.
The European Court of Human Rights’ ruled the doctors' decision would be upheld and his parents were not allowed to intervene in their child’s case.
The family were given extra time to say goodbye before his life support is turned off.
Now US President Donald Trump and the Pope have offered to help as "Charlie's Army" vocalised their support for him all over the world.
British doctors say their "hands are tied" and they are unable to let the tot fly to Italy, so the Italian foreign minister called for crisis talks with Boris Johnson - who backed the doctors' and courts' decision.
Theresa May also confirmed she supports Great Ormond Street’s decision not to let Charlie fly.
She was set to speak with Trump about the child's fate at the G20 summit in Hamburg, as his followers continued their support.
The Pope declared on July 6 he wanted to give the youngster a Vatican passport to help him travel to an Italian hospital for treatment, before a New York Hospital offered to admit him - and even ship experimental drugs to the UK.
On July 10 Charlie's parents went back to the High Court and asked for a fresh review.
Days later Dr Michio Hirano travel from New York on July 17 to examine the baby boy, but on July 21 doctors said the latest scans made for "sad reading".
GOSH chairwoman Mary MacLeod said doctors and nurses at the hospital had been subjected to abuse and threatenbing messages.
Finally Charlie's parents made the heartbreaking decision to let their boy go, and to stop their legal battle.
"We have always been led by Charlie. I promise every single one of you we would not have fought this hard for our son if we thought 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 as they still felt there was a chance of meaningful improvement in his 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 seven 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 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 it shouldn’t have been tried.
"We have only been asking for a three-month trial of treatment to see if there was any improvement. We have been asking for this short trial for the past eight 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 in the attempt to save his life and to be treated by the world leader in mitochondrial disease.
"We feel 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 ifs” that 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 understand everyone is entitled to their opinion and this was always going to be a matter that would cause huge debate.
"In truth, there are no winners here. One thing is for sure though. We know deep within our hearts 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.
"We know the truth and in our hearts we know we have done all 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 to 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 supported us throughout this journey and we also would like to thank the staff at Great Ormond Street, who have looked after Charlie and kept him comfortable and stable for so long. The care he has received from the nurses 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 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.
"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.
"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 no parents have to go through what we have and that the next Charlie that comes along will get this medicine before it’s too late.
"Charlie will save many more lives in 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 we truly believe Charlie may have been too special for this cruel world.
"We are now going to spend our last precious moments with our son, who unfortunately won’t make his first birthday in just under two weeks.
"Mummy and Daddy love you so much Charlie, we always have and 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 — our hero!"