Charlie Gard, an 11 month-old British infant who made headlines around the world over a fierce legal battle on parental rights, had been baptized by April.
Around that time, a picture of his tiny fist made the rounds on the internet of him clutching a St. Jude medal.
The boy’s parents, Chris Gard and Connie Yates, on Friday issued a statement announcing his death, saying: “Our beautiful little boy has gone, we are so proud of you Charlie.”
Family spokesperson Alison Smith-Squire announced on Sunday that he will be buried with his toy monkeys, pictured with him in one of the viral photos of the boy.
“We should be planning Charlie’s first birthday but instead we’re planning his funeral,” his mother said, according to the Sun.
According to the Sun, his parents spent the weekend with family and on Monday were planning to register his death. They had wanted to keep a low profile from the media after the boy’s passing.
Charlie had been at the center of a legal battle between his parents and the Great Ormund Street Hospital (GOSH), an internationally known children’s hospital where he was being cared for. The case raised questions about medical ethics, end-of-life procedure, and parental rights.
Charlie was born on Aug. 4 last year, and in September was discovered to have a rare genetic condition which resulted in muscular deterioration. He was believed to be one of 16 sufferers of the disease in the world.
He was admitted to GOSH in October, and in a series of court cases stretching from March to June, judges repeatedly ruled in favor of doctors who wished to have the boy’s life support removed, all the way to the European Court of Human Rights’ rejection to hear the case. Yates and Gard had hoped to take Charlie to the U.S. for experimental treatment.
In early July, both Pope Francis and U.S. president Donald Trump intervened in support of the family on twitter. Trump said that the United States would cooperate with the boy’s parents in helping Charlie receive the experimental care.
On July 10, unpublished research on Charlie’s condition seemed to indicate the therapy being developed in the States could improve his condition. However, as weeks passed, his condition deteriorated beyond chance of improvement, and GOSH doctors insisted that international specialists claiming he could improve had not fully reviewed his medical records.
Yates and Gard conceded their legal battle on Monday after the latest medical reports indicated their son was beyond improvement indefinitely, and began fighting to have him spend a week in care at home before life support would be pulled.
On Thursday, Yates announced that they had been denied their wish to have him die at home. The boy’s parents had wished to spend a week with him in hospice. This too, however, was denied to them on the grounds that it may cause Charlie prolonged suffering, according to GOSH doctors.
The boy’s death was announced on Friday in a statement from the family.
A number of prominent figures, both from the secular and Catholic worlds, made statements on the passing of the little boy whose plight sparked international support as well as a debate on medical, infant, and parental rights.
Shortly after his passing was announced, Pope Francis tweeted his solidarity with the parents.
“I entrust little Charlie to the Father and pray for his parents and all those who loved him,” the pontiff said. He had previously made two statements in support of and solidarity with the child and his parents. One of these statements led to “the Pope’s hospital,” l’Ospedale Bambino Gesù, offering to care for Charlie.
Days before the boy’s passing, Bambino Gesù issued another statement, called “Charlie’s Legacy,” noting that it was too late for the boy to receive care but also commending the fact that “(f)or the first time, the international scientific community has gathered around a single patient, to carefully evaluate all the possibilities.” They called this “the true legacy of Charlie.”
The Great Ormund Street Hospital, where Charlie spent much of his final months, sent “heartfelt condolences.” Charlie’s parent had accused the hospital of putting up “obstacles” to allowing their child to die at home. The parents’ taking GOSH to court was the spark that lit the months-long legal turmoil for the family.
Theresa May, Prime Minister of Great Britain, said: “I am deeply saddened by the death of Charlie Gard. My thoughts and prayers are with Charlie’s parents Chris and Connie at this difficult time.”
Vice President Mike Pence tweeted, “Saddened to hear of the Passing of Charlie Gard. Karen & I offer our prayers & condolences to his loving parents during this difficult time.”
The March for Life issued a statement with their condolences and offering their prayers for the family.
“Though his life here on earth was cut short, Charlie’s spirit will continue to inspire an international fight to ensure that the sanctity of every human life is respected,” the March’s statement said.
Catherine Glenn Foster, President and CEO of Americans United for Life, issued a statement saying that “Our hearts are heavy today as we learn of Charlie Gard’s passing. 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.” She also offered condolences to the parents and assured that “Charlie’s legacy” would build a culture of life.
The Catholic Association (TCA) also offered their condolences, noting that Gard and Yates had to endure both the death of their son as well as a tumultuous legal fight.
“(T)his excruciating decision should have belonged to his loving and devoted parents,” the TCA said. “There was no apparent compelling justification for the courts to override and replace the unique parental bond of love in this case, which has only added to the heartbreak of Charlie’s passing.”
The TCA statement continued: “The international response to the plight of this baby is a beautiful testament to the irreplaceable value of one human life.”