For months and months, Charlie Gard’s parents have been fighting for his life.
Charlie has a rare genetic condition and resulting brain damage that has robbed him of his ability to move his arms and legs, eat or breathe on his own. The 10-month-old has been connected to machines to help keep him alive.
But Friday, his parents, Chris Gard and Connie Yates, said their son will be disconnected from life support at the Great Ormond Street Hospital for Children in London.
British courts decided Charlie should be allowed to die after a heartbreaking legal battle in which doctors asserted that the child had no chance of survival, and Charlie’s parents argued there was an experimental treatment in the United States they had not tried. The case was taken all the way to the European Court of Human Rights, which declined to hear the case Tuesday, upholding previous court rulings that it was in Charlie’s best interest to withdraw life support.
Now Charlie’s parents say they are not even permitted to take him home to die.
“He’d fight to the very end, but we’re not allowed to fight for him anymore,” Gard said Thursday in a video statement. “We can’t even take our own son home to die.”
Charlie’s parents and their attorney could not immediately be reached for comment, and the hospital said it could not provide specific details about Charlie’s case.
Charlie’s parents said that since November, they have been talking with medical personnel at Great Ormond Street Hospital for Children about their son’s end-of-life care.
One option, the couple said, was to let Charlie die at home.
“So we chose to take Charlie home to die,” his mother said in the video, which was posted on YouTube. “And we have said this for months that this is what we want. That is our last wish, if it went this way — the way it’s gone. 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.”
Charlie’s father said in the video that they want to take their son home and give him a bath, cuddle with him on the couch and let him rest in a crib he has never slept in.
“We’re now being denied that,” Gard said. The parents said hospital personnel told them they could not arrange transport for Charlie and, when the parents offered to pay for it, the parents said the hospital personnel told them that was not an option.
SOURCE: Lindsey Bever
The Washington Post