Colin Farrell recalled the moment he found out about his son James’ Angelman syndrome diagnosis, and the first heart-wrenching question he asked the doctor.
The Phone Booth actor, 48, discussed his first-born son’s, 20, condition in a new interview with People, revealing that he initially didn’t notice any symptoms.
But when James wasn’t ‘hitting benchmarks’ he was first misdiagnosed as having cerebral palsy. It was only when he was about two and a half years old, that a pediatric neurologist suggested he be tested for Angelman syndrome.
Angelman syndrome is a rare neuro-genetic disorder that primarily affects the nervous system, and causes severe physical and intellectual disability.
Recalling the moment he received the diagnosis, Farrell shared: ‘I remember the first two questions I asked were, «What’s the life expectancy and how much pain is involved?»‘
Colin Farrell, 48, recalled the moment he found out about his son James’ Angelman syndrome diagnosis, and the first heart-wrenching question he asked the doctor; seen in March
‘I remember the first two questions I asked were, «What’s the life expectancy and how much pain is involved?»‘ he told People; James, 20, is seen in an Instagram snap
‘And the doctor said, «Life expectancy, as far as we can tell, is the same for you and for me, and pain, no.»‘
The Irish actor — who shares James with ex Kim Bordenave, 52 — said that James was ‘a very silent baby.’
‘I just thought I’d hit the lottery, and he was chill — and he’s anything but,’ he added.
Farrell — who also shares son Henry Tadeusz, 15, with Polish actress Alicja Bachleda-Curus, 41 — said that had James been his second son, he would have recognized something was amiss sooner.
He explained: ‘If James had been my second child and not my first, I would’ve known sooner, because when Henry was born and I heard him cooing, I was like, «A baby’s supposed to coo?»‘
He then explained that James wasn’t reaching the developmental milestones expected of a child his age.
‘He couldn’t sit up. He wasn’t crawling. I think he was a year and a half when we took him to get really checked out, and he was diagnosed as having cerebral palsy. It was a common misdiagnosis, because it shared a lot of the same characteristics. And that was a downer for sure.’
Later on a doctor noticed an unusual symptom that prompted him to test for Angelman syndrome.
‘And the doctor said, «Life expectancy, as far as we can tell, is the same for you and for me, and pain, no,»‘ the actor stated; seen with James in 2009 in Dublin, Ireland
The Phone Booth star — who shares James with ex Kim Bordenave, 52 — revealed that he initially didn’t notice any symptoms, but noted James was ‘a very silent baby’
He explained: ‘If James had been my second child and not my first, I would’ve known sooner, because when Henry was born and I heard him cooing, I was like, «A baby’s supposed to coo?»‘; seen with younger son Henry, 15, in 2023
Colin shared that when James wasn’t ‘hitting benchmarks’ he was misdiagnosed as having cerebral palsy. It was only when he was about two and a half years old, that a pediatric neurologist suggested he be tested for Angelman syndrome
Angelman syndrome is a rare neuro-genetic disorder that primarily affects the nervous system, and causes severe physical and intellectual disability; James seen with mom Kim
‘One of the characteristics of Angelman syndrome is outbreaks of laughter. And the doctor saw that James was laughing a lot and doing this movement [he waves his hands],’ the father-of-two shared.
Angelman syndrome is also characterized by seizures, which Farrell said is ‘one of the things that parents struggle with greatly.’
He added: ‘Thankfully, James hasn’t had a breakthrough seizure now in about 10 or 11 years, but I’ve been in the back of ambulances, I’ve been in the hospital with him. I’ve done Diastat [a sedative] up his rectum to get him out of a seizure that lasted longer than three minutes. Finding the right amount of medication that doesn’t have adverse effects — that’s all very tricky business.’
The actor is now launching the Colin Farrell Foundation to provide support, education, and advocacy for adults with intellectual disabilities.
‘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 he wants to do this.’
The proud dad stated that his eldest son ‘has worked so hard all his life, so hard.’
‘Repetition, repetition, balance, his jerky gait. 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.’
Colin also described watching his son take his first steps just before his fourth birthday.
Detailing the ‘profound’ moment to People, Colin said: ‘I knew they [James’s carers] were working on walking. And I stood over there, and she let him go, and he just came to [me].
‘It was so profound. It was magic.’
‘I’ll never forget just the face of determination on him as he walked toward me. He took, like, six steps, and I burst into tears.’
James’ condition is severe enough that he is nonverbal and requires the help of a live-in caregiver to accomplish his day-to-day tasks.
When James was four, Colin went public with his Angelman Syndrome, saying his son had demonstrated ‘amazing courage’ in the face of his condition.
Colin and James’ mom Kim, 52, dated from 2001 to 2003; seen in 2003 in Los Angeles
He shares his younger son Henry with Ondine co-star, Polish actress Alicja Bachleda-Curus, 41, whom he dated from from approximately late 2008 to early 2010; they are seen in 2010
Shortly before James turned 18, Colin and Kim filed to obtain a conservatorship of him, noting he still needed help with tasks like getting dressed and making meals.
He later went on to reveal that he and James’ mother make sure to share in the smallest victories’ and enjoy the milestones whatever age they happen – including James’ the first words at age six , being able to feed himself at 19, and getting his seizures under control.
Colin has maintained a very private life and has not spoken about his son in great detail until recently although he told InStyle he first decided ‘talk publicly about the pride and joy I had in our son’ while attending the 2007 Special Olympics.’
He said: ‘He has enriched my life, but I don’t want to minimize the trials that so many families go through; the fear, consternation, frustration, and pain… When you’re the parent of a child with special needs, it’s important to feel that you’re not alone.’
Discussing being a parent to a child with disabilities the Hollywood star said that James was the main reason he was able to get sober.
Colin and James’ mom Kim dated from 2001 to 2003. He later had Henry with his Ondine co-star Alicja, whom he dated from from approximately late 2008 to early 2010.
