Parents of terminally ill baby Charlie Gard in the U.K. dropped their legal fight to bring him to the U.S. for experimental treatment on Monday, saying “time has run out” for the 11-month-old fighting a rare genetic disease.
According to a lawyer representing the parents, Chris Gard and Connie Yates, they are now prepared to see him moved to a palliative care facility enabling him to “die with dignity.”
Refusal by English courts to allow the infant’s parents to seek alternative treatments sparked wide debate, with some seeing it as a necessary gesture of compassion for a dying child, and others as an indirect form of euthanasia, as well as an unacceptable form of interference with the rights of the parents to make decisions about their child.
A lawyer representing the parents told a High Court on Monday that the parents were withdrawing their petition, because an American doctor said it was too late to give the infant nucleoside therapy.
“The parents’ worst fears have been confirmed,” said Grant Armstrong, the lawyer represent the parents.
“It is now too late to treat Charlie,” he said.
According to what Armstrong told the court, U.S. neurologist Dr. Michio Hirano had informed the parents that he was no longer willing to offer the baby experimental therapy after he saw the results of a new MRI scan last week.
Gard’s parents had raised almost $1.7 million to support the costs of the treatment, and now say they plan to establish a foundation so their child’s voice “continues to be heard.”
The infant has been diagnosed with encephalomyopathic mitochondrial DNA depletion syndrome, a rare disorder that has left him with brain damage and an inability to move his arms or legs, and for which there is no established medical cure.
A lawyer representing Great Ormond Street Hospital in London where Charlie has been treated since October, said the hearts of each person at the hospital “go out to Charlie, his mother and father.”
The parents first asked for permission to pursue experimental therapy in mid-March. On April 11, a British judge ruled instead that doctors could remove life support from the infant. The parents appealed, and in late May a three-judge Court of Appeals dismissed the petition.
In early June, the parents also lost an appeal to the country’s Supreme Court, and later in the month, the European Court of Human Rights declined to intervene.
Gard’s parents attracted support in their legal fight from several prominent quarters, including Pope Francis in a July 2 Vatican statement.
“The Holy Father follows with affection and commotion the situation of Charlie Gard, and expresses his own closeness to his parents,” reads a statement issued by Greg Burke, the pope’s spokesperson.
“He prays for them, wishing that their desire to accompany and care for their own child to the end will be respected.”
That message came three days after a statement released by the Vatican’s Pontifical Academy for Life, signed by Italian Archbishop Vincenzo Paglia, which appeared to express sympathy for the court ruling preventing the parents from taking the child to the U.S. for treatment.
On Monday, the Vatican released a new statement from Pope Francis.
“Pope Francis is praying for Charlie and his parents and feels especially close to them at this time of immense suffering,” the statement said. “The Holy Father asks that we join in prayer that they may find God’s consolation and love.”
