This terminally ill infant will die — against his parents’ wishes

For months and months, Charlie Gard’s parents have been fighting for his life.

The 10-month-old has a rare genetic condition and brain damage that has robbed him of his ability to move his arms and legs, eat or breathe on his own. He has been connected to machines to help keep him alive.

After a heartbreaking court battle, Charlie’s parents must now let him go.

The European Court of Human Rights declined to hear the case Tuesday, upholding previous court rulings to let Charlie die. Doctors at a British hospital had said that nothing more could be done. Charlie’s parents had said there was an experimental treatment in the United States they had not yet tried. But the courts agreed that Chris Gard and Connie Yates must say goodbye to their son.

“He’d fight to the very end, but we’re not allowed to fight for him anymore,” Gard said in a video on MailOnline. “We can’t even take our own son home to die.”

The parents told the Daily Mail that their son’s life support will be disconnected Friday but that he is not permitted to leave Great Ormond Street Hospital for Children in London, meaning he cannot die at home.

“We know what day our son is going to die and we don’t even get any say in what happens to him,” Gard recently said through tears, according to the tabloid.

The parents and their attorney could not be reached for comment, and the hospital said it could not provide details about Charlie’s case.

Charlie was born in August with a rare genetic condition called infantile-onset encephalomyopathic mitochondrial DNA depletion syndrome, or MDDS, according to court documents.

England’s National Health Services describes it this way:

The term depletion refers to the markedly decreased amount of mitochondrial DNA found in muscle, liver and brain tissues in these disorders. These are severe disorders presenting in early infancy or childhood with profound weakness, encephalopathy, seizures and liver failure.

Weeks after his birth, he was struggling to hold up his head and was not gaining weight. At the two-month mark, he had become lethargic and his breathing had become shallow, according to court records.

Charlie was transported to Great Ormond Street Hospital for Children, where he has been since.

Earlier this year, doctors concluded that nothing more could be done for the terminally ill infant. Charlie’s parents pushed back, arguing that there was an experimental treatment in the United States.

Charlie’s mother wrote on a GoFundMe page several months ago that she and Charlie’s father had new hope:

After endlessly researching and speaking to Dr’s all over the world we found hope in a medication that may help him and a Dr in America has accepted him in his hospital. It hasn’t been tried on anyone with his gene before (he’s only number 16 in the world ever reported) but it’s had success with another mitochondrial depletion syndrome called TK2 which is similar — it’s helping children to get their strength back and live longer! We strongly feel as his parents that Charlie should get a chance to try these medications. He literally has nothing to lose but potentially a healthier, happier life to gain.

Great Ormond Street Hospital went to the courts with this question: Was it legal, and in Charlie’s best interest, for the hospital to remove him from life support — even against his parents’ wishes?

In a ruling in April, Justice Nicholas Francis of the Family Division of the High Court of Justice wrote that there was “unanimity among the experts from whom I have heard that nucleoside therapy cannot reverse structural brain damage.”

“Transporting Charlie to the USA would be problematic, but possible,” he added. “Subjecting him to nucleoside therapy is unknown territory — it has never even been tested on mouse models — but it may, or may not, subject the patient to pain, possibly even to mutations. But if Charlie’s damaged brain function cannot be improved, as all seem to agree, then how can he be any better off than he is now, which is in a condition that his parents believe should not be sustained?”

Francis wrote it was “with the heaviest of hearts but with complete conviction for Charlie’s best interests” that he decided the hospital could withdraw treatment, except for palliative care, to let Charlie “die with dignity.”

An appeals court, then a supreme court, upheld the decision, according to the National Review.

After the European Court of Human Rights’s issued its decision on Tuesday, Great Ormond Street Hospital said it marked “the end of what has been a very difficult process.” But the hospital said in a statement, “There will be no rush by Great Ormond Street Hospital to change Charlie’s care and any future treatment plans will involve careful planning and discussion.”

Charlie’s parents say they do not have a say in where or when their son dies.

“We’ve been talking with Great Ormond Street since November last year when they first started talking about court, about what palliative care meant,” Yates said in the video on MailOnline, “and we had three options: One option was to let Charlie go in the hospital, the other option was to let Charlie go to a hospice, and the third option was to let Charlie go home to die. So we chose to take Charlie home to die.”

The parents said they pleaded with the hospital to give them at least the weekend.

Asked about those claims, a hospital spokesman said he could not discuss the case. The hospital only said, “This is a very distressing situation for Charlie’s parents and all the staff involved and our focus remains with them.”

The parents said they at least want to keep their last promise to their dying son — to take him home.

“That is our last wish, if it went this way — the way it’s gone,” the mother said in the video. “And we’ve promised our little boy every single day that we will take him home because that is a promise we thought we could keep.”

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