There’s an update to the Charlie Gard story and sadly, it doesn’t have the happy ending many have hoped for. While many may not be familiar with the story, we are here to update you on the case of little Charlie Gard, and how he is now resting peacefully with the angels. For the latest in Charlie Gard news, have a look at our Charlie Gard wiki.
Who is Baby Charlie Gard?
He was born on August 4, 2016. Charlie Gard’s disease (mitochondrial DNA depletion syndrome) was diagnosed in September 2016, when the British baby was just one month old. The rare genetic condition causes weakened muscles in patients, including brain damage. When he was just 10 months old, he was unable to move his limbs, breathe without a machine, or even eat. Charlie Gard’s parents, Chris Gard and Connie Yates are now known carriers of the gene and through their own research, they found a doctor in the U.S. who was doing experimental treatment. The treatment was called nucleoside bypass therapy and the doctor, Michio Hirano of New York’s Columbia University Medical Center, was willing to treat Charlie. He specialized in myopathies and neuromuscular diseases.
By the end of January, Cahrlie’s parents had started a GoFundMe page in hopes of raising enough money to travel with him to the U.S. for the treatment. In just three months, the couple surpassed their goal of $1.65 million to cover all of their costs, but the hospital (London’s Great Ormond Street Hospital for Children) refused them, and said it wouldn’t be best for their infant patient.
The hospital released a statement on their website saying, “GOSH concluded that the experimental treatment, which is not designed to be curative, would not improve Charlie’s quality of life.”
Charlie’s parents didn’t agree with the hospital’s decision, but the hospital (GOSH) went even further and obtained a court order that supported their decision to not remove Charlie from their care.
GOSH vs. The World
Those who followed Charlie Guard’s timeline closely were outraged, leading many London residents furious and hostile towards the hospital staff. While UK Prime Minister Theresa May supported GOSH’s choice, other political figures such as Pope Francis and President Donald Trump were in favor of Charlie coming to the U.S. for treatment. Trump even offered assistance to the family and tweeted the he would be “delighted” to help!
Charlie Gard’s Cause of Death
In the end, Charlie’s parents gave up their court battle to take their son to the U.S., after new tests showed that he was unlikely to receive any benefit from the treatment, especially now that his condition had worsened. Sadly, Charlie died on Friday, one week before his first birthday. To make matters worse, this week, just before his passing, Charlie’s parents have been tied up in court fighting for the right to have their son’s death take place at home, rather than at a hospital. The hospital argued that there were too many obstacles, including “the lack of any care provider to accompany Charlie.” Charlie’s mom explained in a YouTube video, that even though their families offered to pay for the costs and care to transport him home, they would not allow it.
“We just want some peace with our son, no hospital, no lawyers, no courts, no media, just quality time with Charlie away from everything to say goodbye to him in the most loving way,” Yates said in a statement after the judge gave their order.
In a public statement, Charlie’s parents said: “Mummy and Daddy love you so much Charlie, we always have and we always will and we are so sorry that we couldn’t save you. We had the chance but we weren’t allowed to give you that chance. Sweet dreams baby. Sleep tight our beautiful little boy.”