I cannot imagine the pain Charlie Gard’s parents are feeling now, as they savor their last moments with their precious child. Charlie is 11 months old and he’s dying.
Chris and Connie have been fighting for months to get treatment for Charlie, ever since he was diagnosed with a rare genetic condition, mitochondrial DNA depletion syndrome. But they have been forced to give up that fight.
I can’t imagine their pain, but I can imagine their fury because I share it.
From the Hospital to the Courts
No further recourse was available in the UK, but an American doctor was ready to try to help him.
Charlie is not mine. I’ve never met him or anyone who knows him. Yet I am furious with the British government for refusing to allow his parents to take their dying son to the United States for treatment: a therapy trial, his last and only hope.
No further recourse was available in the UK, but an American doctor was ready to try to help him at Columbia University Medical Center. Charlie’s parents raised £1.4 million through crowdfunding; they had the money to take him to the US by air ambulance.
But doctors at Great Ormond Street Hospital in London didn’t like that idea. They said it wouldn’t help, that the American therapy was experimental. They said the baby’s life support should just stop.
On April 11th, a British High Court judge ruled with the doctors, empowering them to turn off Charlie’s life-support machines. His mother screamed “no” when she heard the verdict.
There was a petition with more than 110,000 names on it. People wrote letters to the Prime Minister, calling on her to release Charlie from Great Ormond Street’s care. The pope said he was praying for Charlie’s parents, “hoping that their desire to accompany and care for their own child to the end is not ignored."
And now Charlie is out of time.
Even US President Trump tweeted that "If we can help little #CharlieGard, as per our friends in the U.K. and the Pope, we would be delighted to do so."
Charlie’s parents challenged the decision in the Court of Appeals, the Supreme Court, and the European Court of Human Rights.
All to no avail. The Courts would not allow them to try to save their baby’s life.
Who Can Call This Justice?
And now Charlie is out of time. According to the BBC, "US neurologist Dr. Michio Hirano had said he was no longer willing to offer the baby experimental therapy after he saw the results of a new MRI scan last week."
It’s possible that Charlie’s doctors were right, that experimental treatment wouldn’t have helped (although his parents don’t think so, nor do American and Italian doctors). But what harm could it have done when he’s dying anyway? And if his parents had the means to give him one last chance, why shouldn’t they exercise their right to do so? They belong to Charlie just as he belongs to them, and no one but Chris and Connie should get the final say on his medical care.
This is outrageous. And it’s wrong.
I never really knew what people meant by the phrase “death panels” before. It was just a term bandied about by talking heads and political personalities. It’s chilling how well it applies in this instance: a group of bureaucrats that sits around deciding who is worthy of medical care.
I don’t know how the power slipped away from the individual, whether taken by force or given away with applause, but this is outrageous. And it’s wrong.
Read with a Box of Tissues
I will leave you with the words of Connie Yate’s, Charlie’s mom:
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 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.
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.
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.
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.
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.”