Colin Farrell reveals the heartbreaking question he asked a doctor after his son James, 20, was diagnosed with Angelman syndrome

Colin Farrell remembers the moment he learned his son James had Angelman syndrome and the first heartbreaking question he asked the doctor.

The 48-year-old Phone Booth actor discussed the condition of his 20-year-old firstborn son in a new interview with Peoplewhich showed that he initially noticed no symptoms.

But when James didn’t “meet the benchmarks,” he was first misdiagnosed with cerebral palsy. It wasn’t until he was about two and a half years old that a pediatric neurologist suggested testing him for Angelman syndrome.

Angelman syndrome is a rare neurogenic disorder that primarily affects the nervous system and causes severe physical and intellectual disability.

Farrell recalls the moment he was diagnosed: ‘I remember the first two questions I asked were, “What is the life expectancy and how much pain is involved?”‘

Colin Farrell, 48, recalls the moment he learned his son James had Angelman syndrome and the first heartbreaking question he asked the doctor; seen in March

“I remember the first two questions I asked were, ‘What is the life expectancy and how much pain is involved?'” he told People; James, 20, is seen in an Instagram photo

And the doctor said, “Life expectancy, as far as we know, is the same for you and me, and pain, no.”

The Irish actor, who shares James with his ex Kim Bordenave, 52, said James was “a very quiet baby”.

“I thought I had won the lottery, and he was relaxed, but he is absolutely not,” he added.

Farrell, who also has a son Henry Tadeusz (15) with Polish actress Alicja Bachleda-Curus (41), said that if James had been his second son, he would have realised sooner that something was wrong.

He explained: ‘If James had been my second child and not my first, I would have known sooner. Because when Henry was born and I heard him cooing, I thought, “Isn’t a baby supposed to coo?”‘

He then explained that James was not reaching the developmental milestones expected of a child his age.

“He couldn’t sit up. He wouldn’t crawl. I think he was a year and a half old when we took him in for a thorough checkup, and he was diagnosed with cerebral palsy. That was a common misdiagnosis, because it had a lot of the same characteristics. And that was definitely a bummer.”

Later, a doctor noticed an unusual symptom, which led him to be tested for Angelman syndrome.

“And the doctor said, ‘The life expectancy, as far as we can tell, is the same for you and me, and pain, no,'” the actor said; seen with James in 2009 in Dublin, Ireland

The Phone Booth star, who shares James with ex Kim Bordenave, 52, revealed he didn’t notice any symptoms at first but noted James was “a very quiet baby”

He explained: ‘If James had been my second child and not my first, I would have known sooner because when Henry was born and I heard him cooing, I thought, “Isn’t a baby supposed to coo?”‘; seen with youngest son Henry, 15, in 2023

Colin said that when James wasn’t ‘meeting the benchmarks’ he was misdiagnosed with cerebral palsy. It wasn’t until he was about two and a half years old that a pediatric neurologist suggested testing him for Angelman syndrome

Angelman syndrome is a rare neurogenetic disorder that primarily affects the nervous system and causes severe physical and intellectual disabilities; James seen with mother Kim

‘One of the characteristics of Angelman syndrome is bursting out laughing. And the doctor saw that James was laughing a lot and making this movement [he waves his hands]’, the father of two said.

Angelman syndrome also involves seizures. According to Farrell, this is “one of the things that parents have a lot of trouble with.”

He added: ‘Thankfully James hasn’t had a breakthrough seizure for about 10 or 11 years now, but I’ve been in the ambulances, I’ve been in the hospital with him. I’ve done Diastat [a sedative] through his rectum to bring him out of a seizure that lasted longer than three minutes. Finding the right amount of medication that doesn’t have side effects — that’s all a tricky business.’

The actor is now setting up the Colin Farrell Foundation to provide support, education and advocacy to adults with intellectual disabilities.

“This is the first time I’m talking about it, and the only reason I’m doing it is because I can’t ask James if he wants to do this.”

The proud father stated that his eldest son “has worked so hard, so hard, his whole life.”

“Repetition, repetition, balance, his jerky gait. When he first started eating himself, his face looked like Jackson Pollock by the end. But he gets it in, he eats himself beautifully. I’m proud of him every day, because I think he’s just magical.”

Colin also shared how he saw his son take his first steps just before his fourth birthday.

Colin told People about the “profound” moment, saying, “I knew she [James’s carers] were walking. And I was standing there, and she let him go, and he just came to [me].

“It was so profound. It was magical.”

“I’ll never forget the determined look on his face as he walked toward me. He took, like, six steps, and I burst into tears.”

James’ condition is so serious that he cannot speak and requires the help of a caregiver to carry out his daily tasks.

When James was four, Colin revealed he had Angelman syndrome, saying his son had shown “incredible courage” despite his condition.

Colin and James’ mother Kim, 52, were in a relationship from 2001 to 2003; seen in Los Angeles in 2003

He shares his youngest son Henry with Ondine’s co-star, Polish actress Alicja Bachleda-Curus, 41, whom he dated from around late 2008 to early 2010; they can be seen in 2010

Shortly before James turned 18, Colin and Kim filed for conservatorship, noting that he still needed help with tasks like dressing and cooking.

He later said that he and James’ mother made a point of sharing the smallest victories and enjoying the milestones, no matter what age they were, such as James learning his first words at age six, eating on his own at 19, and getting his seizures under control.

Colin has always had a very private life and hasn’t spoken about his son in detail until recently. However, he told InStyle that he first decided to “talk openly about the pride and joy I had in our son” when he attended the Special Olympics in 2007.

He said: ‘He has enriched my life, but I don’t want to minimise the trials that so many families go through; the fear, the devastation, the frustration and the pain… When you are the parent of a child with special needs, it is important to feel that you are not alone.’

When the Hollywood star talked about his role as a parent of a disabled child, he said James was the main reason he was able to get sober.

Colin and James’ mother Kim were in a relationship from 2001 to 2003. Later, Henry started a relationship with his Ondine colleague Alicja, with whom he was in a relationship from around late 2008 to early 2010.