Charlie Gard's short life captured hearts around the world

Charlie Gard's short life captured hearts around the world

Charlie Gard's short life captured hearts around the world

Updated 29 July 2017, 6:20 AEST

The baby boy whose fight for life made headlines and sparked ethical debate around the world has died.

"Mummy and Daddy love you so much. We always have and we always will. And we are so sorry we couldn't save you."

Today marked the end of a young life, and that of a legal and ethical battle that captured hearts and minds across the world.

Charlie Gard, the baby boy with the rare genetic disease mitochondrial depletion syndrome, has died just days before his first birthday.

Charlie was born on August 4, 2016, and went on to become a household name as the central figure in a legal battle that sparked intense debate over parental rights and experimental medical treatment and drew offers of support from the likes of US President Donald Trump and Pope Francis.

What is mitochondrial DNA depletion syndrome (MDDS)?

  • A group of disorders associated with severe reduction in mitochondrial DNA
  • Mitochondria is found in most cells, responsible for producing energy
  • Mitochondrial DNA depletion impairs function in many of the body's cells and tissues
  • Can result in muscle weakness, leading to respiratory failure and death
  • Can also result in deformities in the brain and/or liver
  • Source: US National Library of Medicine

His parents, Chris Gard and Connie Yates, took their son to Great Ormond Street Hospital in London in September when he was just eight weeks old.

Charlie's disease meant the mitochondria in his cells — the powerpacks of every human cell — did not work. It affected almost every organ in his body. He could not move or breathe unaided and began having fits.

As his condition deteriorated, Charlie's doctors came to the view that his brain damage was irreversible and that further treatment would be ineffective. The doctors decided they should stop trying to keep him alive and, with palliative care, allow him to die.

Mr Gard and Ms Yates found hope in the possibility Charlie could undergo nucleoside bypass therapy in the United States, but UK doctors said while they had considered the treatment, it was experimental and would not help.

Charlie's doctors at Great Ormond Street Hospital applied to the High Court in February for permission to withdraw the respirator keeping Charlie alive and allow him to die with dignity.

But his parents said they "would not fight for the quality of life he has now", sparking the legal battle that went on for most of Charlie's short life.

Despite Mr Gard and Ms Yates raising a massive $2.5 million in a tireless social media campaign to fund treatment in the US, and the US Congress granting Charlie permanent resident status so he could receive the treatment there, judges residing in courtrooms all the way up to the European Court of Human Rights agreed with Charlie's doctors.

"We are continuing to spend every moment, working around the clock to save our dear baby Charlie," his parents said during the last court hearing before his death.

"We've been requesting this specialised treatment since November, and never asked the hospital, courts or anyone for anything — except for the permission to go."

Charlie's parents unsuccessfully appealed the decision in several courts.

Finally, in July 2017, they reluctantly decided to let Charlie die. Their only wish was to take him home.

But that option, too, was out of the question. The court deemed the logistical problems of taking Charlie home insurmountable, and decreed that he only be taken to a hospital or hospice.

Given the ultimate choice for where their son was to die, Charlie's parents chose a hospice rather than the Great Ormond Street Hospital, where he spent most of his short life.

The judge ordered the name of the hospice and the exact timing of Charlie's last moments not be disclosed to the public.

After their last court appearance in the legal saga, Mr Gard and Ms Yates addressed the media over the inevitable and looming death of their baby boy.

"We're about to do one of the hardest things we will ever have to do, which is to let our beautiful little Charlie go," Mr Gard said outside the court.

"Put simply, this is about a sweet, gorgeous, innocent little boy who was born with a rare disease who had a real, genuine chance at life and a family that love him so very dearly. And that's why we fought so hard for him."

Despite US and Italian teams still offering to treat Charlie, Mr Gard said there was one simple reason why treatment could not go ahead, and that was time.

"Our son is an absolute warrior and we could not be prouder of him and we will miss him terribly."

"To Charlie, we say Mummy and Daddy love you so much. We always have and we always will. And we are so sorry we couldn't save you.

"Sweet dreams, baby, sleep tight our beautiful little boy. We love you."

Although Charlie died days shy of his first birthday on August 4, this little boy that captured the world's attention will not soon be forgotten.

As his father said in the days before his death:

"His body, heart and soul may soon be gone, but his spirit will live on for eternity. He will make a difference to people's lives for years to come, we will make sure of that."