Colin Farrell opens up on life with son James, 20, who has rare Angelman syndrome

COLIN Farrell has shared a very rare glimpse inside his life with son James who was born with Angelman syndrome.

The Oscar-nominated star, 48, has started a foundation to support adults with cognitive disabilities in honour of James.

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James was born with Angelman syndrome, a rare condition characterised by developmental delay, problems with speech and balance and, in some cases, seizures.

Colin’s son will be turning 21 in September and anticipating the difficulty for adults with intellectual disabilities to gain independence the actor established The Colin Farrell Foundation.

Colin, who shares James with his ex, Canadian model Kim Bordenave, said in a new interview with People Magazine that he wants the “world to be kind”.

The Irish star shared that James “has worked so hard all his life, so hard” at learning repetition and balance, and improving his jerky gait.

The In Bruges actor said: “When he started feeding himself for the first time, his face looks like a Jackson Pollock by the end of it. But he gets it in, he feeds himself beautifully. I’m proud of him every day, because I just think he’s magic.

“This is the first time I’ve spoken about it and, obviously, the only reason I’m speaking is I can’t ask James if wants to do this.

“I mean, I can. I speak to James as if he’s 20 and has perfect fluency with the English language and age-appropriate cognitive ability.”

He explained that once children with James’ cognitive abilities get to 21 much of the support put in place gets stripped away.

Which is what in-part inspired Colin to set up the foundation with the intention of helping others of a similar age.

And while Colin looks forward to his son’s milestone birthday he can’t help but be aware of the challenges it will bring to James.

He said: ” He has earned autonomy, and he has earned having a greater sense of community and a greater sense of freedom.

“I’ve had 20 years to think about the struggles of a child with special needs… it’s very much been localised for me, of course, personalised. It’s very much been about James, about my son.

“James has benefited a lot from the doctors I can get on the phone easier than most people, from the money I have to pay for certain therapeutic interventions.”

He went on: “Once your child turns 21, they’re kind of on their own.

What is Angelman syndrome?

Angelman syndrome is a rare genetic condition which affects the nervous system and causes severe physical and learning disabilities.

Children with it have their development delayed when they are between six and 12 months old. Those with the condition have a near-normal life expectancy, but they will need lifelong support. It affects around one in 20,000 births.

This leads to them being unable to sit up unsupported, and they sometimes make babbling noises.
Later, they may not be able to speak at all, or will only be able to say a few words.

Most children with Angelman syndrome are able to communicate through gestures, signs or other methods.
The condition can also make walking difficult because of issues with balance and coordination.

Other physical signs include trembling arms or jerky movements, crossed eyes, a tendency to stick the tongue out, and the legs may also be stiff.

Angelman syndrome can cause children to laugh frequently with little reason, become easily excitable and restless, and can also give them a fascination with water.

They can also have a short attention span, struggle to sleep, and need less sleep than those without the syndrome.

Those with the condition have a near-normal life expectancy, but they will need lifelong support.

The most common cause of Angelman syndrome is when the gene known as UBE3A is either missing or not working properly.

A child usually gets two copies, one from each parent, but only the one from the mother is active.

In most cases of Angelman syndrome, the child does not get a copy of the UBE3A gene from its mother, or the gene is not working. This means there is no active copy of the gene in the child’s brain.
Source: NHS

“All the safeguards that are put in place, special ed classes, that all goes away, so you’re left with a young adult who should be an integrated part of our modern society and more often than not is left behind.”

The Spaceman actor was seen playing with a ball in the garden with James during the photoshoot for People Magazine.

Colin said if James knew the purpose behind the shoot was to help young adults who live with special needs, he would say: “Dad, what are you talking about? Why are you even asking me? It’s a no-brainer.”

The film star also has another son called Henry, 14, with actress Alicja Bachleda-Curús.

The focus of the foundation will begin in California – where the family live and work and Colin has ambitions to spread their endeavour across the US and ultimately to Ireland.

Advocate for children

Colin will lead the foundation, but be supported by a highly experienced board of directors and CEO.

The foundations CEO is Paula Evans who established FAST – The Foundation for Angelman Syndrome Therapeutics in the States.

Even before having James, Colin was an advocate for children with additional needs as he proudly stood front and centre in Croke Park for the 2003 Special Olympics.

And since then Colin has served as an Ambassador for the Special Olympics, each Olympiad raising money for the event and sometimes – even making an appearance.

FAMILY LIFE

Colin paid tribute to the two as the “loves of his life” in his 2023 Golden Globes acceptance speech.

He said of James, now 19, and 13-year-old Henry: “My kids at home are watching this, James and Henry, the loves of my life. I love you so much.”

Speaking of James and his achievements, he told People in 2013: “Things like walking and talking and eating and feeding himself, all those things that so many of us naturally take for granted because they come so easily, to James, they come somewhat harder.

“Everything he’s achieved in his life has come through the presence and the kind of will that is hard work. He’s a lot to be inspired by.”

He joked how younger son Henry was left mortified by one of his fashion choices.

He told Ellen DeGeneres: “I didn’t know [short shorts are] in now. My youngest son would disagree vehemently with you. Because he’s mortified.

“He says, ‘Please Dad, do not wear the short shorts.’ And I tell him, ‘They feel good.’ It’s not a fashion thing.”

And in 2020, he told of his close bond with the two.

He told Express : “Although I don’t know what I’m doing as a parent most of the time, I’m just flying by the seat of my pants. I think that as simple as it sounds, if you are just present and attentive as a parent, and also as cheesy as this sounds open to learning from your child, then that’s the best you can do.”

And he said he has “very open and communicative relationships” with them, adding: “But just as I’ve introduced them to the best aspects of myself, I’ve also introduced them, just by virtue of regularly interacting with them, to the most traumatised and damaged aspects of myself. They are both of them there for me, like two samurai masters, there to teach me a lot of stuff.”

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