The mother and father of a brain-damaged 11-month-old baby on Friday were sitting bedside with the boy after losing a legal battle that would have kept the boy on life support. The doctors at the Great Ormond Street Hospital for Children in London, who are caring for Charlie Gard received permission from a court to discontinue life support.
The boy’s parents objected to the decision and wanted to take him to the U.S. for an unproven, experimental therapy. Charlie suffers from a rare genetic condition and brain damage, known as mitochondrial depletion syndrome. He is unable to breathe unaided.
Earlier in the day, parents Chris Gard and Connie Yates said they had expected the hospital to end life support for Charlie in obedience to the court order. But hours later, the hospital said in a statement that "together with Charlie's parents we are putting plans in place for his care and to give them more time together as a family."
Hospital officials also asked that the family and hospital staff be given "space and privacy at this distressing time." It's not clear how long life support will be continued for Charlie.
On Tuesday, the parents lost a bid to take Charlie to the U.S. for trial therapy when the European Court of Human Rights sided with earlier rulings that continued treatment would cause "significant harm" and that life support should end.
Specialists have said the proposed therapy wouldn't help Charlie. Charlie was born in August. The Journal reported that he was diagnosed with infantile-onset encephalomyopathic mitochondrial DNA depletion syndrome. “His brain, muscle and ability to breathe are all severely affected. In addition, he has congenital deafness and a severe epilepsy disorder,” a professor who specializes in mitochondrial diseases told the U.K. High Court that heard the case.
The appeal was the last legal option in the couple's four-month battle. After the final ruling, the hospital said there would be "no rush" to make any changes in Charlie's medical care. His parents had complained that the hospital wouldn't allow Charlie to be brought home to die. The boy's parents have released a video saying "we're not allowed to choose if our son lives and we're not allowed to choose when or where Charlie dies."
Charlie's case has gained attention online, raising nearly $1.8 million on GoFundMe to send him to the U.S. He is believed to be one of only 16 children worldwide with the disease.
