Alfie Evans is a month away from his second birthday.
He’s lying in a hospital in Liverpool, in the UK, on life support, with a soft toy close to him. There are security guards stationed nearby. Outside, hundreds of people calling themselves “Alfie’s Army” are protesting for his parents’ right to take him overseas for treatment, rather than let him “die peacefully”, as the doctors want.
So what’s wrong with Alfie, and how did things get to this point?
Alfie seemed like a normal, healthy baby when he was born to parents Kate James and Tom Evans. But he didn’t develop like other babies, and his parents felt he was “very sleepy”. He began making jerking movements, and then developed a chest infection. He ended up on life support at Alder Hay Children’s Hospital in December 2016.
“They told us in the new year that Alfie wasn’t going to make it so we had him christened,” his parents wrote on a crowdfunding page.
“We thought we were going to lose our son! But Alfie had other ideas. He managed to beat the infection and start breathing on his own.”
But Alfie developed another infection and went back on life support. He’s been in a “semi-vegetative” state now for more than a year.
Doctors say he has a degenerative neurological condition, but they don’t have a definitive diagnosis. It’s been suggested he could have a mitochondrial condition, like Charlie Gard.
The legal battle
In December last year, the hospital applied to a court to turn off Alfie’s life support. Their lawyer, Michael Mylonas said MRI scans showed “catastrophic degradation” of Alfie’s brain tissue. He said any movements Alfie was making were “merely seizure activity”, even though his parents believed he was responding to them.
Mr Justice Hayden said he accepted the medical evidence that any further treatment was futile.
"Alfie's need now is for good quality palliative care," he ruled.
Alfie’s parents want to transport him to a Vatican-linked hospital in Italy. They have taken their battle against the hospital all the way to the European Court of Human Rights.
“Failed disgracefully by the system,” Evans posted online.
“We as parents are not giving up… Our son is about to be murdered, taken away from us, his innocent life is about to be taken.
“Please our Queen, Pope Francis, please Angela Merkel. Someone save our innocent not dying son. He looks into our eyes every day, he responds to us every day. Alfie James Evans we love you so so so much. We will do everything we can.”
This week, Court of Appeals judges again ruled against Alfie’s parents.
LISTEN: Sue Channon talks about what it is like to be a parent of a very sick child and what people can do to make life a little bit better.
Alfie’s parents have a huge number of supporters. Calling themselves Alfie’s Army, they’ve been gathering outside the hospital, holding up signs. But they haven’t exactly been silent. They’ve been shouting through megaphones. Nurses have complained of being stopped from entering the hospital, and family members from visiting sick children. At one point, some protesters stormed the intensive care ward, and police had to be called in.
Chief Inspector Gibson said there were instances of verbal abuse and acts of intimidation.
"We would like to remind the public that this is a hospital for sick children and it should not be forgotten that many families are going through extremely challenging and emotional times,” he said, The Sun reports.
Even Pope Francis has joined Alfie’s Army. Last Sunday, he called for prayers for “little Alfie Evans”.
Alfie’s parents aren’t giving up. They’re planning to go back to court.
Yesterday, Evans posted a photo of Alfie with his eyes open on the Alfie’s Army Facebook page.
“This is what he is telling the world, the judges, the doctors, the trolls - he’s fighting, not dying.”