WASHINGTON (BP) — Charlie Gard — the infant at the center of a battle over parental authority that gained international attention — has died, his parents announced today (July 28) in England.
“Our beautiful little boy has gone, we are so proud of you Charlie,” his mother, Connie Yates, said in a statement, according to the British Broadcasting Corp. (BBC) News.
Charlie died in hospice care a week short of his first birthday, Aug. 4, after being removed from a ventilator. He was born with a rare condition known as mitochondrial DNA depletion syndrome (MDDS). His parents — Chris Gard and Yates — fought numerous legal battles for their son’s life and raised about $1.7 million for an experimental treatment in the United States that he never was permitted to receive.
The Great Ormond Street Hospital, where Charlie was a patient, refused to permit the therapy and received the backing of British courts and the European Court of Human Rights for removal of his life support.
Pro-life advocates grieved the infant’s death after the legal battle that came at the intersection of the sanctity of human life, medical ethics and parental rights.
“Our hearts are heavy today as we learn of Charlie Gard’s passing,” said Catherine Glenn Foster, president of Americans United for Life. She provided legal counsel for the parents in the last weeks of Charlie’s life. “We are so thankful for his life, which though too brief, has made a lasting impact on the world and drawn together people from all walks of life and political persuasions, uniting them around the dignity and value of every human being.”
Southern Baptist ethicist Russell Moore had said July 24, “Charlie Gard might be invisible to the European authorities, but Jesus knows and loves him.
“The European courts’ abuse of their power by usurping the authority of Charlie’s parents regarding his care is shocking to the conscience,” said Moore, president of the Ethics & Religious Liberty Commission.
Charlie appeared healthy at birth but began to deteriorate soon thereafter, BBC News reported. He eventually had severe brain damage and could not open his eyes, breathe without a ventilator or move his limbs.
Michio Hirano, a Columbia University neurology professor, had offered to try nucleoside bypass therapy with Charlie. Hirano traveled to London to determine if Charlie might still be a candidate for the experimental treatment, but a MRI scan indicated it was too late, according to BBC News.
On July 24, the parents ended their legal fight to gain treatment for Charlie. Their lawyer told a judge in a British High Court hearing that “time had run out” for the infant, BBC News reported. Since the experimental treatment no longer seemed to hold promise, the parents said they “are now going to spend our last precious moments” with their son.
Gard and Yates lost a final court battle Thursday (July 27), when a judge ruled Charlie would be moved from the hospital to a hospice instead of his home to die after being removed from a ventilator, according to BBC News.
President Trump and Pope Francis both offered in early July to help the parents.
The U.S. House of Representatives passed an amendment July 18 to grant permanent residence status to Charlie Gard and his parents, according to The Hill newspaper. The proposal would have expedited the process for them to travel to the United States for the experimental treatment.