Charlie Gard has a rare genetic disease

By Alexia Fernandez
July 03, 2017 12:35 PM
Credit: Charlie's Fight/Instagram

A British couple is spending their final hours with their 10-month-old son, Charlie Gard, after their last-ditch efforts to try and keep him alive were denied.

Charlie was meant to be taken off of life support on Friday, but his parents, Chris Gard and Connie Yates, were granted more time with him by the Great Ormond Street Hospital for Children in London, where he is being treated.

Charlie has a rare genetic disease and resulting brain damage that has left him without the ability to move his arms and legs, eat or breathe on his own. He suffers from infantile onset encephalomyopathy mitochondrial DNA depletion syndrome (MDDS), according to The Telegraph.

The family’s story has made headlines worldwide, with Pope Francis and President Donald Trump offering support to the grieving parents.

“The Holy Father is following with affection and emotion the situation of little Charlie Gard and expresses his closeness to his parents. He is praying for them, in the hope that their desire to accompany and care for their own child until the end will be respected,” the director of the Holy See Press Office, Greg Burke, said in a statement Sunday.

On Monday, President Trump tweeted: “If we can help little Charlie Gard, as per our friends in the UK and the Pope, we would be delighted to do so.”

A White House spokesperson alluded to the possibility of having the baby treated in the United States on Monday.

“Upon learning of baby Charlie Gard’s situation, President Trump has offered to help the family in this heartbreaking situation,” Helen Ferre, the director of media affairs at the White House, said 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.

“Due to legal issues, we can not confirm the name of doctor or hospital where the baby could be treated in the United States.”

His parents fought against the decision to take him off of life support because they wanted to take him to the U.S. for an experimental treatment.

British courts ruled against that, believing Charlie should be allowed to die after doctors asserted that Charlie had no chance of survival.

According to the BBC, the court (in consultation with his doctors) determined that further treatment would “continue to cause Charlie significant harm.”

The case was taken all the way to the European Court of Human Rights, which decided against hearing the case Tuesday and upheld previous court rulings that it was in the child’s best interests to withdraw life support.

A spokesperson for the hospital told The Washington Post in a statement that the decision to postpone Charlie’s death has allowed his parents to spend more time with their son.

“Together with Charlie’s parents we are putting plans in place for his care, and to give them more time together as a family,” the statement read. “We would ask you to give the family and our staff some space and privacy at this distressing time.”

Yates spoke to the Daily Mail on Friday, saying the hospital had agreed to their requests to spend more time with their son.

“We have been in talks today with Great Ormond Street and they have agreed to give us a little bit more time with Charlie,” she said. “We are really grateful for all the support from the public at this extremely difficult time. We’re making precious memories that we can treasure forever with very heavy hearts. Please respect our privacy while we prepare to say the final goodbye to our son Charlie.”