As was reported earlier Monday, Charlie Gard’s parents have decided to end the legal battle to keep him alive and attempt treatment outside the United Kingdom.
Chris Gard, with Charlie’s mother Connie Yates standing next to him, made a tearful statement to the press on how and why they’ve come to the decision at this time.
Emotional scene as Charlie Gard's parents issue statement after decision to no longer pursue treatment. https://t.co/JwBmPZ2u8R pic.twitter.com/lZrJq9ONkL
— ABC News (@ABC) July 24, 2017
The statement reads as follows and is striking in what it reveals about Charlie’s case:
Via Jake Tapper on Twitter.
Firstly, I would like to thank our legal team who have worked tirelessly on our behalf for free. And to the nurses and staff at Great Ormond Street Hospital who have cared for Charlie and kept him comfortable and stable for so long.
We would also like to thank everybody who supported us, including all the people here for us today. 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 loved 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 a recent MDT meeting by Dr Hirano.
As Charlie’s devoted and loving parents, we’ve decided that it is no longer in Charlie’s best interest 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 his recent MRI and EEG perform last week, but there is one simple reason why treatment cannot now go ahead and that is time. A whole lot of time has been wasted. 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. Tragically having had Charlie’s medical notes reviewed by independent experts, we now know had Charlie been given the treatment sooner, he would have had the potential to be a normal healthy little boy.
Despite his condition in January, Charlie’s muscles were in pretty good shape and far from showing irreversible catastrophic structural brain damage. Dr Hirano and other experts say his brain scans and EEGs were those of a relatively normal child of his age. We knew that ourselves because as his parents, we knew our son, which is why we continued fighting.
Charlie’s been left for his illness to deteriorate devastatingly to the point of no return.
This has also never been about ‘parents know best’.
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’ll have to live with the what-ifs, which will haunt us for the rest of our lives.
Despite the way that our beautiful son has been spoken about sometimes, as if he is 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.
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. We will make sure of that.
We are now going to spend our last precious moments with our son Charlie who unfortunately won’t make his first birthday in just under two weeks’ time.
And we will ask that our privacy is respected during this very difficult time.
To Charlie we say mummy and daddy, we love you so much. We always have and we always will and we are so sorry we couldn’t save you.
Sweet dreams baby, sleep tight our beautiful little boy. We love you
We now know that the hospital withholding treatment as the protracted legal battle over whether Charlie’s death sentence would hold created a scenario in which the boys condition was allowed to deteriorate to the point that the long shot medical treatment was even less likely to be effective.
To repeat, for emphasis, Charlie’s grieving father: “had Charlie been given the treatment sooner, he would have had the potential to be a normal healthy little boy.”
The doctors were still willing to go ahead with treatment, even after new scans and tests revealed that the treatment could not undo the damage already done by the hospital and the court’s unwillingness to let Charlie Gard’s parents take him elsewhere when they were no longer willing to provide treatment.
Whether Charlie Gard would’ve survived through experimental treatment in the United States, we’ll never know. But that’s not the point. This serves as the best reminder of what can happen when the government is in charge of health care. When courts decide whether or not you have the right over yourself and your children to try to live and the government has been given the power to stop you and say, “No, you’ll stay here and die because we say so.”
This is a tragic day for Charlie and his parents. It’s also a sorry indicator of where we are on the road of individual liberty and the rights we have to our own lives today.
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