On Monday, July 25, Chris Gard and Connie Yates made the heartbreaking decision to let their little boy, Charlie Gard, be removed from his ventilator. After months of crusading for a chance for him to receive the experimental treatment, time had run out for the little boy, whose muscle deterioration had gone too far. Now the couple is fighting for the chance to bring their little boy home to die.
In a statement yesterday, Gard said,
“The Italian and American team were still willing to treat Charlie after seeing both his recent brain MRI and EEG performed last week, but there is one simple reason why treatment can now not go ahead, and that is time. A whole lot of time has been wasted.”
The Gards had been fighting since January to get their little boy, who will be one on August 4th, experimental treatment, even crowdfunding the money in full.
Gard revealed that Dr. Hirano, the American neurologist who flew out to London to review Charlie’s case last week, said that his brain scans in January were far from those of a child with catastrophic brain damage; they were actually much closer to that of a relatively normal child of his age.
“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,” added Gard.
“Charlie has been left with his illness to deteriorate devastatingly to the point of no return,” said Gard, who was at the point of tears.
Today, the couple is in court once again to appeal the court to let me take their son home to die. The lawyers for the couple told the High Court that all they want now is "a few days of tranquility outside the hospital before Charlie passes away."
CNN reports that Great Ormond Street Hospital says they have concerns about “getting the right medical equipment into Charlie's home and had suggested a hospice and a mediator.” However, Charlie’s parents have stated that they will pay all costs related to bringing Charlie home.
"I am sensing that timing is a lot of the problem here," said Justice Francis, who is presiding over the case. "It now seems to hinge partly on how long parents want to keep Charlie alive at home."
The judge has now asked GOSH lawyers and the Gard’s lawyer to write up an order “for relevant experts to meet and determine what is possible.”
The BBC reports that Justice Francis expressed his desire to help the parents.
"If going home can be achieved within reason then I would like to achieve that for them."
This is an ongoing story, and we will update you on the outcome. If you would like to read more about their decision to stop seeking treatment, you can read our article here.