Charlie Gard, the British infant who caught the world’s attention while his parents fought to bring him to the U.S. for treatment, has died, four days after his parents agreed to end their legal struggle.
“Our beautiful little boy has gone, we are so proud of you Charlie,” his mother, Connie Yates, told the Daily Mail.
President Donald Trump joined the growing chorus of supporters for Charlie Gard, a 10-month old U.K. baby whose parents have been in bitter court battles to keep him alive. They hoped to bring him to the U.S. for a potentially life-saving treatment and their fight has even earned the attention of Pope Francis and the Vatican. However, on July 24, Charlie’s parents announced that they will end their legal fight to bring him to the U.S.
“If we can help little #CharlieGard, as per our friends in the U.K. and the Pope, we would be delighted to do so,” Trump tweeted.
Gard, who was born in August 2016, was diagnosed with a rare inherited disease called “infantile onset encephalomyopathy mitochondrial DNA depletion syndrome,” also known as MDS or MDDS. He was scheduled to be taken off life support on June 30, but doctors at Great Ormond Street Hospital in London allowed Chris Gard and Connie Yates to spend more time with their son. His family provided updates on Facebook.
Here’s what you need to know about Charlie’s fight.
1. Charlie’s Disease Meant His Muscles, Kidney & Brain Do Not Get the Energy They Need
Charlie was diagnosed with mitochondrial DNA depletion syndrome (MDS). That means his body has significantly less mitochondrial DNA than the average person. Mitochondria is usually in found in human cells and converts chemical energy from food.
However, since Charlie lacked the normal number of mitochondria, his muscles, brain and kidneys did not get the energy they need. As the Evening Standard notes, Charlie has to be fed through a tube and needs a ventilator to breathe.
Charlie was born “perfectly healthy” and was carried for a full nine months, reports the Telegraph. However, a month after he was born, his parents saw that he was having trouble lifting his head. His doctors later diagnosed him with MDS and he has been on life support since October 2016.
2. His Parents Wanted the Hospital to Release Him so They Can Take Him to the U.S. for Experimental Treatment
On January 30, Yates launched a GoFundMe page to raise money so they could take Charlie to the U.S. to receive an experimental treatment. Yates noted that there’s no guarantee that the procedure could work, but they believe it will give Charlie a fighting chance. Yates wrote:
“After endlessly researching and speaking to Dr’s all over the world we found hope in a medication that may help him and a Dr in America has accepted him in his hospital. It hasn’t been tried on anyone with his gene before (he’s only number 16 in the world ever reported) but it’s had success with another mitochondrial depletion syndrome called TK2 which is similar – it’s helping children to get their strength back and live longer!”
In five months, over 83,000 people have donated over £1.3 million ($1.7 million) to the family.
However, the couple haven’t been able to move to the U.S. to get Charlie the treatment. But the doctors at Great Ormond Street have considered Charlie’s condition terminal and refused to release the baby into his parents’ care. The U.S. doctor who said he might treat Charlie, said it is unlikely to work.
The doctor was quoted in the April High Court judgement. “I agree that it is very unlikely that he will improve with that therapy. It is unlikely,” the doctor told the court. The judge, Justice Nicholas Francis, ruled that it would be in Charlie’s best interest for the life support to be removed.
3. Charlie’s Parents Decided to End Their Court Challenges to Take Him to the U.S. on July 24 & He Died on July 28
Yates and Gard appealed Francis’ decision all the way to the European Court of Human Rights in France. As CNN reports, the court approved an extension to keep Charlie alive until June 13. But on June 27, the court ruled that it agreed with the U.K. court rulings that the U.S. treatment would likely not work.
“The domestic courts concluded that it would be lawful for the hospital to withdraw life sustaining treatment because it was likely that Charlie would suffer significant harm if his present suffering was prolonged without any realistic prospect of improvement, and the experimental therapy would be of no effective benefit,” the court said on June 27.
“There will be no rush by Great Ormond Street Hospital to change Charlie’s care and any future treatment plans will involve careful planning and discussion,” the hospital said after the Human Rights Court ruling.
The hospital agreed to keep Charlie alive past June 30 so his parents could spend more time with him.
On July 24, a lawyer for Gard’s parents told the High Court that “time had tun out” to same Charlie. The BBC reports that his parents saw the results of a recent test, which showed that the treatment they thought would help will not save Charlie’s life. The parents now wish to spend as much time with Charlie as they can.
During the hearing on July 24, Yates testified that she is still convinced that her son could have been saved if he received the treatment in the U.S. sooner. She said there was no evidence of brain damage or proof that he was in pain or suffering. She said that her son is not brain dead and that time had been wasted because of the extended court battle.
Four days after ending their court battle, Yates and Chris Gard told the Daily Mail that their 11-month-old son has died. “Our beautiful little boy has gone, we are so proud of you Charlie,” Yates told the paper.
4. Pope Francis & Donald Trump Both Voiced Support for Charlie’s Parents
At first, the Vatican surprisingly accepted the court decisions that everything that could be done to help Charlie had already been done by his doctors. However, on July 2, Pope Francis reversed his stance. As The Daily Mail reports, the Vatican said the Pope “prays for them, hoping that their desire to accompany and care for their child until the end is not disregarded.”
That was a dramatic change from a statement the Archbishop Vincenzo Paglia of the Pontifical Academy of Life issued on June 30, notes The Guardian.
“We should never act with the deliberate intention to end a human life, including the removal of nutrition and hydration,” that statement read. “We do, sometimes, however, have to recognise the limitations of what can be done, while always acting humanely in the service of the sick person until the time of natural death occurs.”
President Donald Trump also showed support for Charlie’s parents on Twitter. “If we can help little #CharlieGard, as per our friends in the U.K. and the Pope, we would be delighted to do so,” Trump wrote.
“Upon learning of baby Charlie Gard’s situation, President Trump has offered to help the family in this heartbreaking situation,” White House director of media affairs Helen Ferre told CNN in a statement. “Although the President himself has not spoken to the family, he does not want to pressure them in any way, members of the administration have spoken to the family in calls facilitated by the British government. The President is just trying to be helpful if at all possible.”
5. Charlie’s Parents Will Help Other Children Get Life-Saving Treatments by Creating a Foundation
“A few people have asked us what we’ll do if we don’t win the court case. We’d like to save other babies and children because these medications have been proven to work and we honestly have so much belief in them,” Yates wrote. “If Charlie doesn’t get this chance, we will make sure that other innocent babies and children will be saved.”
On June 29, the couple posted a video message, saying that they hope to spend Charlie’s last moments at home if he can’t go to the U.S. for treatment.
“So we chose to take Charlie home to die and we have said this for months, that that is what we want. That is our last wish, if it went this way, the way it’s gone,” Yates said in the video. “And we promised our little boy, every single day, that we would take him home, because that is a promise we thought we could keep.”
Charlie’s parents also launched the site CharliesFight.org.
During the hearing on July 24, the Gards’ lawyer, Grant Armstrong, said the parents will establish a foundation to help others. Armstrong said children with mitochondrial disease need to be treated as soon as possible.