Charlie Gard, the terminally ill British baby at the center of an international debate that drew the attention of President Donald Trump and Pope Francis, died

By Erin Hill
July 28, 2017 01:33 PM

Charlie Gard, the terminally ill 11-month-old baby at the center of an international ethical and medical debate that drew the attention of President Donald Trump and Pope Francis, died on Friday — just one week before his first birthday.

In a statement, his parents said: “Our beautiful little boy has gone, we are so proud of you Charlie.”

Charlie was surrounded by his loving parents, Chris Gard and Connie Yates of west London, who brought him to a hospice to die on July 27 after a lengthy legal battle, which saw them go to London’s High Courts in an effort to gain permission to bring him to the U.S. for treatment. Eventually, it was determined by a series of tests that his chance of improvement did not exist.

On Friday, Pope Francis tweeted: “I entrust little Charlie to the Father and pray for his parents and all those who loved him.”

In September 2016, Charlie was diagnosed with an extremely rare genetic condition — mitochondrial depletion syndrome — which causes progressive muscle weakness and brain damage. The condition left him unable to move his limbs or eat or breathe without assistance.

Source: Charlie Gard #charliesfight/Facebook

He was treated at London’s Great Ormond Street Hospital for Children, which eventually concluded that it would be best to stop providing life support for Charlie and instead move on to a palliative care regime.

The High Court ruled in 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.”

However, his parents argued that he should have been allowed to travel to the U.S. to receive an experimental medication, writing on their GoFundMe page that “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.”

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.

Source: Charlie Gard #charliesfight/Facebook

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.”

“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.”

Paul Davey/Barcroft Images

The family’s story made headlines worldwide when Pope Francis and President Donald Trump offered support to the grieving parents.

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.”

On July 7, GOSH applied to the High Court for a fresh hearing in light of claims of new evidence related to potential treatment for Charlie’s condition. Charlie’s parents are given time to gather the new evidence for analysis by the court.

Michio Hirano, a neurology professor at Columbia University Medical Center, traveled to London on July 17 to evaluate Charlie. After viewing his latest scans, Hirano determined it was too late to give him nucleoside therapy.

Once it was established that there was no medical chance for improvement, the parents accepted legal advice to withdraw legal proceedings.

Source: Charlie Gard #charliesfight/Facebook

On July 24, Charlie’s parents officially withdrew their application to take their son to the U.S. for treatment, ending their legal battle.

A lawyer representing Chris Gard and Connie Yates told the High Court that “time had run out” for Charlie after a U.S. doctor said it was too late to give him nucleoside therapy. 

Speaking in court on July 24, Yates said making the decision to “let him go” was the hardest thing she and her partner had done in their lives, and that they still believed his condition could have improved with treatment had it been administered earlier.

“We only wanted to give him a chance of life,” she said through tears. “A whole lot of time has been wasted.”

Outside the courtroom, Charlie’s father, Chris, said: “We will have to live with the ‘what-ifs,’ which will haunt us for the rest of our lives. Despite the way our beautiful son has been spoken about sometimes — as if he is not worthy at a chance at life — our son is an absolute warrior and we could not be prouder of him and we will miss him terribly.”

“To Charlie, we say, Mommy and Daddy love you so much. We always have and we always will, and we are so sorry we couldn’t save you,” he continued. “Sweet dreams, baby. Sleep tight our beautiful little boy. We love you.”