Could You Do It? Charlie Gard’s Parents Decide To Let Him Die After Tests Show Lack Of Treatment Has Deteriorated His Chances

(SL)- The parents of Charlie Gard bitterly condemned doctors yesterday after they made the heartbreaking decision to let their baby son die.

Connie Yates reduced a courtroom to tears while accusing Great Ormond Street of wasting so much time her little boy no longer had hope.

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‘We are so sorry we couldn’t save you,’ she said.

‘We had the chance but we weren’t allowed. Sweet dreams baby. Sleep tight our beautiful little boy.

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 whosechildren 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.

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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.

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.

LITTLE BOY’S YEAR OF TORMENT

August 4, 2016 Charlie born 8lb 3oz to Connie Yates and Chris Gard.

October 2016 Tests reveal mitochondrial depletion syndrome. Believed to be only 16th sufferer in the world of rare strain.

Autumn 2016 Miss Yates finds specialist in US testing nucleoside therapy, but it has never been tried on Charlie’s rare type.

January Gosh doctors say drug would be futile because of irreversible brain damage. Parents contact US doctor.

March Gosh asks High Court to let Charlie die. Mr Justice Francis gives parents a month to make case for treatment. Daily Mail readers help raise £197,000 in days to help fly Charlie to US.

April Doctors say he is likely to be in pain. Judge rules Gosh should let him die.

May Court of Appeal upholds ruling. Parents appeal to Supreme Court.

June Supreme Court rejects appeal. On June 27, European judges back decision. Gosh gives parents more time with Charlie. Pope Francis intervenes, followed by Donald Trump on July 3.

July 7 Seven scientists hand Gosh fresh evidence showing higher survival chances.

July 10 Mr Justice Francis gives parents 48 hours to produce new evidence in case.

July 13 US specialist Dr Michio Hirano invited to London by High Court

July 17 Dr Hirano examines Charlie.

July 21 Court told scan results ‘very sad’.

Today High Court due to rule on the case, ten days before Charlie’s birthday – but his parents end their legal battle.

 

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