A terminally ill British child has attracted the attention of both the president of the United States and the pope. More than 1.3 million pounds (USD 1.68 million) has been raised to help 11-month-old Charlie Gard travel to America for treatment.
But little has changed for baby Charlie, who suffers from a rare genetic disease that has left him brain damaged and unable to breathe unaided. The life support he is receiving at a London hospital soon will be turned off over the objections of his parents, who want to take him to the United States for experimental therapy they believe could prolong his life.
A succession of judges has backed specialists at Great Ormond Street Hospital who say the treatment won't help Charlie and may cause him to suffer. Britain's Supreme Court ruled it's in the boy's best interests to be allowed to die with dignity.
They have been spending time with Charlie before he is taken off life support.
"The world is watching," reads the headline across the top of charliesfight.org, the website dedicated to Charlie's cause. "Two of the most powerful men in the world want to give Charlie Gard his chance."
Great Ormond Street Hospital said Tuesday there were no new updates on Charlie's care.
Trump tweeted Monday that he would be "delighted" to help Charlie, who is suffering from mitochondrial depletion syndrome, which causes progressive muscle weakness. The president's comment came after Pope Francis issued a statement saying the parents' rights to treat their son "until the end" should be respected.
The Vatican children's hospital studied whether it was possible for Great Ormond Street to transfer Charlie to Rome. But Bambino Gesu hospital President Mariella Enoc said she was informed that the board of the London hospital said Charlie cannot be moved for legal reasons.
However, the matter was still being examined Tuesday.
"I was contacted by the mother, who is a very determined and decisive person and doesn't want to be stopped by anything," Enoc told reporters.
"Overcome these problems? If we can do it, we will do it," Parolin said.
The fight over keeping Charlie alive is not about money. Charlie's parents have used a crowdfunding website to raise the money needed to pay for his treatment in the US. Instead, it revolves around an ethical debate about what's best for the child.
The rights of the child take primacy, rather than the rights of parents to make the call. It is a principle that applies even in cases where parents have an alternative point of view, according to Britain's Court of Appeal.
And Britain's courts have been consistent in this case. Three courts agreed that the experimental treatment would be futile and may "well cause pain, suffering and distress to Charlie". The parents then took their case to the European Court of Human Rights, which refused to intervene and endorsed the British judges' decision.
Claire Fenton-Glynn, an academic at the University of Cambridge who studies children's rights, said:
In the United States, such disputes are normally negotiated between parents and doctors, according to Arthur Caplan, head of the division of bioethics at New York University Langone Medical Center in New York City. A family's ability to afford endless care usually poses a bigger obstacle than ethical disagreements.
Even the Vatican had difficulty with Charlie’s case, as was clear in the conflicting messages that at first came from the Holy See.
Caplan said Charlie's situation is a reminder that medicine and technology can't fix everything, even in wealthy countries with cutting-edge technology.
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