On July 24, Charlie Gard’s parents were resigned to the fact that their infant son couldn’t travel to the United States because his condition has gotten “to the point of no return.”
Charlie was born on August 4, 2016, to Chris Gard and Connie Yates from the London suburb of Bedfont. The child was born with mitochondrial DNA depletion syndrome, a rare genetic condition that prevents muscle growth.
Both Chris Gard and Connie Yates had been campaigning for their son to be allowed to travel to New York City for experimental treatment on their son. That campaign ended on July 24. Charlie’s parents said that the time has run out for the infant and their legal battle against Great Ormond Street hospital is over. They had been campaigning against a court ruling that said Charlie’s life support should be ended.
Here’s what you need to know:
1. They Have Raised Nearly $1.7 Million for Their Son’s Cause
According to Charlie’s Go Fund Me page, the family has raised nearly $1.7 million to go towards his treatment. The page was launched in January 2017 and achieved it’s goal by April. The page shares some info about the background to Charlie’s diagnosis. The page reads:
He was born on the 04/08/16 (4th of August) perfectly healthy but then he started to decline. We took him into hospital at 8 weeks old and none of us have been anywhere near home since. We have been with Charlie day in, day out & watched our poor baby get weaker and weaker, he now needs a ventilator to breathe but we have never lost hope throughout all this time!
2. Chris Gard Is a Postman & Connie Yates Is a Carer
Chris Gard works as a postman for the Royal Mail in England while Connie Yates works as a carer, reports the Sun.
Post on Chris’s Twitter page as well images shared of Charlie show Chris to be a fan of English soccer giants Arsenal.
3. They Have Condemned the Death Threats Leveled at the Staff of Great Ormond Street
A spokeswoman for Great Ormond Street said on July 22 that staff at the hospital had received death threats in relation to the case. The chairwoman of the hospital referred to staff receiving “thousands of abusive messages.” In a statement, Chris and Connie condemned the threats, reports the BBC.
4. Chris Gard Said on July 24 That He & Yates ‘Are About to Do the Hardest Thing We Will Ever Have to Do’
In an emotional speech given on the steps of London’s High Court, Chris Gard said that he and Yates “are about to do the hardest thing we will ever have to do.” He added that it was time to let Charlie “go and be with the angels.” Their lawyer, Grant Armstrong, said that it was “worthy of a Greek tragedy” that Chris and Connie had to withdraw their efforts as they were about to present new evidence to the court.
Chris Gard’s statement continued, “Firstly I would like to thank our legal team who have worked tirelessly on our behalf for free and to 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 has supported us, including all the people here about us today.”
The statement went on, “This is one of the hardest things we will ever have to say and we are about to do the hardest thing we will 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.”
5. An Ethics Professor Said ‘Lessons Must Be Learned’ From the Charlie Gard Case
University of Oxford professor of medical ethics, Dominic Wilkinson, said in a statement, via the Daily Mirror, that “lessons must be learned” from the Charlie Gard case. Professor Wilkinson said:
Following further medical assessment of Charlie by several international experts, Charlie’s parents and doctors finally reached agreement that continuing life support and experimental treatment could not help him.
There are important lessons to learn from this case.
Where agreement cannot be reached, there is an important role for the courts in helping to reach a decision. However, court review of cases like this is not ideal.
It is adversarial, costly, and lengthy. In this case, Charlie has received months of treatment that doctors and nurses caring for him felt was doing him more harm than good.
We need to find better ways to avoid cases of disagreement from coming to court. There is an important role for mediation to help parents and doctors where they have reached an impasse.
We also need a fair, expedient way of resolving disputes. This would mean that patients can access early experimental treatment if there is a reasonable chance that it would not cause significant harm.