It’s a bright Sunday morning and he watches cartoons from his pirate bed covers clutching Sunshine, his favourite teddy, who’s been with him through some pretty tough times.
The room is dominated by stuffed toys and pictures of boats. But in one corner machines bleep and whirr. These machines are keeping him alive.
“We tried to make his room as normal as possible,” said his dad, Art, as he carefully dressed his son in blue shorts and a striped t-shirt.
If anyone can understand what Charlie Gard’s parents are going through it’s Art Estopinan. His son has a similar condition to Charlie, which began when he was a baby.
“When he was about 20-18 months or so we thought we were going to lose him because everything was shutting down.
“We called in a priest to give him the last rites but luckily, little by little, he started to get stronger with these medications.”
Art is referring to experimental medication given by the same US doctor who is offering to treat Charlie. He gave them some light in their darkest period.
“My son was dying and no one gave us hope – everyone told us: ‘go home – he will die’.
“I looked at this doctor in the eye and I said I will do everything possible to save my son – and I did.”
The medication comes in powder form. It is dissolved in water and given to Arturo three times a day.
His mum and dad said progress has been slow but gradually their son is getting stronger.
He is alert, he can move his legs and arms and clutch things in his hands.
Experts have said that while Arturo and Charlie have similar conditions they can’t be compared because they are different mutations. Arturo’s dad said this is no reason not to try.
“Charlie is writing the books for his mutation just like my son did for his,” he said.
“With all due respect to those doctors, because I’m only a father I’m not a doctor, they perhaps are unaware of the extraordinary medications.
“Even though they are experimental, these are clinicians and medical doctors that are specialists in mitochondrial conditions and they are hopeful and they believe that these medications will work for Charlie Gard.”
Art has been to the UK to meet Charlie and his parents, Connie and Chris, and has kept in touch with them throughout their battle.
“I speak to Connie often. Even though we are separated by an ocean – we are one family.”
Arturo couldn’t wait for our interview to be over so he could get outside in his wheelchair into the sunshine. He loves being near the water. He told his mum, Olga, he wants a fishing rod.
He also loves dogs and The Lion King. Overall he is able to experience joy and a quality of life his parents didn’t dare to dream of a few years ago.
But there is no guarantee that Charlie would respond in the same way.
These parents – who have faced unimaginable challenges – want their friends across the sea to have at least the same chance they did.