President Donald Trump and Pope Francis have voiced their support for the parents of critically ill British baby Charlie Gard. The pair have been engaged in a long legal battle to take their son to the U.S. for treatment for a rare genetic disease.
Who is Charlie Gard, and why is his case so significant? Here’s what you should know.
Who is Charlie Gard?
In September 2016, Charlie Gard, who’s now 10 months old, was diagnosed with a rare genetic condition called mitochondrial depletion syndrome, which causes progressive muscle weakness and brain damage. He cannot move his limbs or eat or breathe without assistance.
His parents, Chris Gard and Connie Yates, are both carriers of the faulty gene, but were unaware of it until Charlie turned three months old. According to a fundraising page they set up, Charlie is only the sixteenth known person in the world with the condition.
Why do his parents want to send him to the U.S.?
Charlie’s parents believe an experimental medication offered in the U.S. may be able to help the child, who is on life support.
“After endlessly researching and speaking to [doctors] all over the world we found hope in a medication that may help him and a [doctor] in America has accepted him in his hospital,” wrote the parents on Charlie’s fundraising page. “It hasn’t been tried on anyone with his gene before . . . but it’s had success with another mitochondrial depletion syndrome called TK2 which is similar.”
Gard and Yates added that they “strongly feel . . . Charlie should get a chance to try these medications” and he has “literally has nothing to lose but potentially a healthier, happier life to gain.”
The pair set up a GoFundMe page to help raise money to send Charlie to the U.S. They raised £1.3 million ($1.68 million) in five months, with donations from 83,563 people.
What do Charlie’s doctors say?
Charlie’s doctors at London’s Great Ormond Street Hospital for Children, or GOSH, believe there is no cure for his condition, which is terminal.
A statement on the hospital’s website explains that “GOSH explored various treatment options” including nucleoside therapy, the experimental treatment offered by the U.S. hospital. “GOSH concluded that the experimental treatment, which is not designed to be curative, would not improve Charlie’s quality of life,” the statement says.
After balancing whether the experimental treatment was in Charlie’s best interests or not, the GOSH doctors said they thought it would be best to stop providing life support for Charlie and instead move on to a palliative care regime, allowing him to “die with dignity.”
“One of the factors that influenced this decision was that Charlie’s brain was shown to be extensively damaged at a cellular level. The clinician in the U.S. who is offering the treatment agrees that the experimental treatment will not reverse the brain damage that has already occurred,” the statement says.
“The entire highly experienced U.K. team, all those who provided second opinions and the consultant instructed by the parents all agreed that further treatment would be futile — meaning it would be pointless or of no effective benefit,” it adds.
What is stopping him from going to the U.S.?
Because Charlie’s parents disagreed with the doctors’ decision about Charlie’s future treatment, the decision went to the Family Division of Britain’s High Court in London.
The High Court ruled last April “with the heaviest of hearts” that it was in Charlie’s best interests for GOSH to “lawfully withdraw all treatment save for palliative care to permit Charlie to die with dignity.”
The judge said his decision not to allow Charlie to go to the U.S. was not related to funding. “I dare say that medical science may benefit objectively from the experiment, but experimentation cannot be in Charlie’s best interests unless there is a prospect of benefit for him,” he said, referring to the trial treatment, The Guardian reported at the time.
On May 2, the couple took their fight to the Court of Appeal, asking the judges not to take away the “only remaining hope.” However, on May 25, three Court of Appeal judges upheld the High Court ruling. Britain’s Supreme Court then agreed to review the case, but ruled that Charlie’s life support must be switched off.
Charlie’s parents took the case to the European Court of Human Rights (ECHR). But on June 27, the ECHR ruled that, in agreement with the domestic courts’ ruling, “undergoing experimental treatment with no prospects of success” would offer Gard “no benefit, and continue to cause him significant harm.” In a statement acquired by The Guardian, the ECHR declared the decision as “final.”
What was the response to the European Court’s judgement?
“Our thoughts are with Charlie’s parents on receipt of this news that we know will be very distressing for them,” said a spokesperson for GOSH. “Today’s decision by the European court of human rights marks the end of what has been a very difficult process and our priority is to provide every possible support to Charlie’s parents as we prepare for the next steps.”
In a Facebook post, Charlie’s parents wrote that they are “utterly heartbroken.” The post added: “We’re not allowed to choose if our son lives and we’re not allowed to choose when or where Charlie dies. We and most importantly Charlie have been massively let down throughout this whole process.”
Following the ECHR’s decision, campaigners gathered at Buckingham Palace to protest the ruling, chanting “save Charlie Gard” and “release Charlie Gard” and holding placards, with one reading, “It’s murder.”
What have President Trump and Pope Francis said?
“If we can help little #CharlieGard, as per our friends in the U.K. and the Pope, we would be delighted to do so,” wrote Trump on Twitter Monday morning.
His comment came one day after Pope Francis said in a statement that he was following the case “with affection and sadness,” adding that he was praying that Gard’s parents’ “wish to accompany and treat their child until the end isn’t neglected.”