Colin Farrell takes ‘nothing for granted’ as he opens up on his son’s rare neurogenetic disorder

Colin Farrell takes “nothing for granted” since the birth of his son, who was born with a rare neurogenetic disorder.

Colin Farrell takes “nothing for granted” since the birth of his son.

The 48-year-old actor has 21-year-old son James, who was born with Angelman syndrome, a rare neurogenetic disorder. that causes delayed development, intellectual disability, and problems with movement, balance, and speech – with his ex-girlfriend Kim Bordenave and reflected on the “deep sense of fear” that has come over him in the years that he had to deal with his life as a parent.

He told Candis magazine: “When James was born, we thought he was perfect. Well, he is perfect – but we thought he was physically and neurologically perfect, too.

“You really do take nothing for granted. There’s a deep sense of fear – I’ve run through hospital with James in my arms when he was having a seizure – but there’s also a sense of love and respect. You know how you hear that a child’s first steps are a seminal moment in the life of the parent – as well as the child. Well, if you’ve been told there’s a chance your child will never walk, those steps take on a whole new meaning.”

The ‘Penguin’ star – who also has 15-year-old son Henry from his previous relationship with Alicja Bachleda-Curuś – described his non-verbal son as “strong, brave, and self-willed” but does worry about something happening to himself or Kim in the future.

He said: “James is incredibly strong, brave, and self-willed. He works so hard to achieve the physical

capabilities that most of us nail by the time we’re two or three. But he’s lovely, James. He’s funny ****. He’s cheeky as anything. “He’s got a smile that would light up Manhattan – he has such a gorgeous spirit.

“It’s tricky…some parents will say, ‘I want to take care of my child myself.’ And I respect that. But my horror would be… what if I have a heart attack tomorrow, and, God forbid, James’ mother, Kim, has a car crash and she’s taken too – and then James is on his own. Then he’s a ward of the state and he goes where? We’d have no say in it. And one thing I can say about James is that he knows when somebody wants to be with him, and he knows when somebody’s just supposed to be with him. So, if he has a carer or a teacher or somebody who’s doing physical therapy with him and they’re not fully engaged and fully loving with him, he’ll just switch off. What his mother and I want is to find somewhere we like where he can go now, while we’re still alive and healthy, that we can go and visit, and we can take him out sometimes. We want him to find somewhere where he can have a full and happy life, where he feels connected. He needs a bigger life than we can afford him, by having a sense of community that he feels connected to, by going out in the van every day and going to the supermarket and doing the shopping together, by going to the beach, museums, movies, all that stuff. Just a connected life.”

To combat the issue, the Hollywood actor set up the Colin Farrell Foundation towards the end of last year and noted that even though the venture its still in its infancy, he should have more time to focus on it now that his own children have grown up.

“It’s been a struggle for us to find suitable residential care.

“And in realising that, I thought, ‘If I’m having these difficulties, what about all the other families out there that don’t have anything close to the means that I have?’

“I’ve always known I wanted to do something about this, but until now I’ve just been really self-centredly busy in raising my own two kids. But now, they’re up and running and I feel I have a bit more space to do something. It’s early days for the foundation yet, so we’re still on baby steps.”