British baby Charlie Gard, who was at the center of a legal battle that captured the world's attention, died this morning, one week before his first birthday.
His mother, Connie Yates, said in a statement, "Our beautiful little boy has gone, we're so proud of him."
Charlie was born on August 4, 2016, seemingly healthy. But two months into his short life his parents noticed his health was declining.
He was diagnosed with mitochondrial DNA depletion syndrome, a rare inherited condition that causes muscle weakness and loss of motor skills.
As the disease progressed, Charlie became weaker, losing the ability to move his arms or legs or breathe, and he experienced seizures. He was then placed on a ventilator that was breathing for him.
At the end of January, Charlie's parents launched a GoFundMe page to raise money to bring Charlie to the United States for treatment.
In three months, they exceeded their £1.3 million goal to cover the costs, but the hospital stepped in and opposed this effort, stating that it was not in the best interest of their patient.
In February, the hospital decided, based on Charlie's status, that treatment was unlikely to benefit Charlie. Unable to agree, the hospital went to court to have a judge decide, hoping to be able to remove Charlie from life support.
In April, the UK High Court ruled that it was in the infant's best interest for his treating clinicians to remove the ventilator keeping him alive.
That decision was then backed by the European Court of Human Rights in June, which ruled not to intervene in the case.
This was upheld by a British Supreme Court decision that the hospital could discontinue life support to Charlie and he could not be transferred to the US or elsewhere.
On Monday, Charlie's parents gave up their fight to take Charlie to the US after new brain and muscle scans revealed their son had deteriorated and was therefore less likely to benefit from the experimental treatment, while his doctors and parents battled in court. Too much time had passed.
Charlie's story and his parents' fight caught the attention of world leaders near and far, including UK Prime Minister Theresa May, who supported the hospital, Pope Francis and US President Donald Trump.
Source: BBC
