On Monday, the parents of terminally ill British infant, Charlie Gard, abandoned the legal bid to take their son to the United States for experimental care after being presented with dire new medical tests.
The couple’s attorney, Grant Armstrong, said recent tests on the 11-month-old revealed irreversible muscular damage and that the couple made their final decision after seeing Charlie’s latest brain scans.
“It’s too late for Charlie,” Armstrong told Judge Nicholas Francis during a London High Court hearing. “The damage has been done.”
Judge Francis was due to rule Monday on whether there was sufficient new evidence to permit the parents to bring Charlie to the U.S. for a an experimental therapy.
The parents broke into tears in the courtroom as their lawyer told the judge: “It is no longer in Charlie’s best interest to pursue this course of treatment.”
The decision ends a case that has drawn global attention, prompting world leaders like President Donald Trump and Pope Francis to weigh in.
Charlie Gard was born with a rare genetic disease called encephalomyopathic mitochondrial DNA depletion syndrome. Globally, there are currently only 16 confirmed cases of the genetic mutation.
He is deaf and blind, he cannot breathe or move without aid, and he suffers from frequent epileptic seizures.
Earlier this year, the London hospital treating him asked for permission to remove him from life support, calling it the most humane path forward. His parents wanted to take him to the United States in an effort to prolong his life – even though his disease has no cure – but lost the legal fight in both Britain’s Supreme Court and the European Court of Human Rights in Strasbourg.
In its decision, the Court of Human Rights argued that 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.”
President Donald Trump and some conservative American politicians used the case as an opportunity to criticize Britain’s single-payer health care system. A week after the Court of Human Rights decision, Trump wrote on Twitter that the United States would be “delighted” to help.
The British government maintained that the case was never about money. It argued that under British law the courts have the final say in medical disputes about children. “In this country, children have rights independent of their parents,” Judge Francis said.
Outside the courtroom, supporters held blue balloons in solidarity with the parents, who intend to “establish a foundation for Charlie’s voice to be heard,” Armstrong said.
The judge commended the parents “for the love and the care they gave to their child Charlie,” adding that “no parents could have done more for their child.”
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