UPDATE: Charlie's parents will be "allowed" to spend more time with him as the hospital continues to make plans to shut off his life support.
Charlie Gard, the 10-month-old baby in the United Kingdom who is afflicted with a rare mitochondrial disease, will have his life support withdrawn after his parents lost their appeal to transport their son to the United States for an experimental treatment.
"Baby Charlie," as he came to be known, cannot breathe on his own, has seizures, and suffered severe brain damage as a result of his disease. In March, doctors told Charlie's parents that they did not believe that they could do anything further to treat their son, and recommended that they withdraw life support. Despite the grim diagnosis, Charlie's parents raised over $1 million to move him to the U.S. for treatment, but the European Court of Human Rights ruled against them on Wednesday and will not permit them to treat their son.
The court said that they did not believe that the experimental treatment in the U.S. would benefit Charlie, and that it would cause him "significant harm."
“The domestic courts had concluded, on the basis of extensive, high-quality expert evidence, that it was most likely Charlie was being exposed to continued pain, suffering and distress and that undergoing experimental treatment with no prospects of success would offer no benefit, and continue to cause him significant harm.”
On Facebook, Charlie's parents said that they were "heartbroken" and that they were aghast that they were not permitted to choose when or where their son would die. Previously, they have said that they would like their son to pass away at home, not in a hospital. They are not permitted to take him home, and they say that the hospital is "rushing" to turn off the ventilator.
It's absurd that a court can claim to know what's in Charlie's best interest. His parents are neither negligent nor incompetent, and they should not be prohibited from trying a last-ditch effort to try to improve their son's life. Further, the fact that they're not allowed to choose when and where to withdraw life support on their terms is maddening. This is a sickening violation of basic humanity.