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.