Colin Farrell recalled the moment he learned of his son James’ Angelman syndrome diagnosis and the first heartbreaking question he asked his doctor.
The 48-year-old Phone Booth actor opened up about his 20-year-old firstborn’s condition in a new interview with Peoplerevealing that he initially did not notice any symptoms.
But when James wasn’t “meeting benchmarks,” he was first misdiagnosed with cerebral palsy. It wasn’t until he was two-and-a-half years old that a pediatric neurologist suggested he be tested for Angelman syndrome.
Angelman syndrome is a rare neurogenetic disorder that primarily affects the nervous system and causes severe physical and intellectual disability.
Recalling the moment she received her 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 learned of his son James’ Angelman syndrome diagnosis and the heartbreaking first 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?'” she told People; James, 20, is seen in an Instagram snap.
‘And the doctor said, “Life expectancy, as far as we know, is the same for you and me, and there is no pain.”
The Irish actor, who shares James with ex Kim Bordenave, 52, said James was “a very quiet baby”.
“I thought I had won the lottery and he was calm, but it’s not like that at all,” 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 child, he would have recognised sooner that something was wrong.
She 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, “Is a baby supposed to coo?”
She then explained that James was not reaching the developmental milestones expected for a child his age.
“He couldn’t sit up or crawl. I think he was a year and a half old when we took him in for a full check-up and he was diagnosed with cerebral palsy. It was a very common misdiagnosis because he shared a lot of the same characteristics. And that was a letdown, for sure.”
A doctor later noticed an unusual symptom that led him to test her for Angelman syndrome.
“And the doctor said, ‘Life expectancy, as far as we know, is the same for you and me, and pain is not,'” said the actor, seen with James in 2009 in Dublin, Ireland.
The Phone Booth star, who shares James with ex Kim Bordenave, 52, revealed she didn’t initially notice any symptoms but noted James was “a very quiet baby.”
She 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, “Is a baby supposed to coo?”‘ Seen with youngest son Henry, 15, in 2023.
Colin said that when James was not “meeting the benchmarks,” he was misdiagnosed with cerebral palsy. It wasn’t until he was two-and-a-half years old that a pediatric neurologist suggested he be tested for Angelman syndrome.
Angelman syndrome is a rare neurogenetic disorder that primarily affects the nervous system and causes severe physical and intellectual disability; James seen with his mother Kim
“One of the hallmarks of Angelman syndrome is fits of laughter. And the doctor saw that James was laughing a lot and making this movement (moves his hands),” the father of two shared.
Angelman syndrome is also characterized by seizures, which Farrell said is “one of the things parents struggle with the most.”
He added: “Luckily James hasn’t had a sudden seizure in about 10 or 11 years, but I’ve been in the back of ambulances, I’ve been in hospital with him. I’ve given him Diastat (a sedative) rectally to bring him out of a seizure that lasted over three minutes. Finding the right amount of medication that doesn’t have any adverse effects – it’s all a very complicated issue.”
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’m talking about it and obviously the only reason I’m talking about it is because I can’t ask James if he wants to do this.”
The proud father said his eldest son “has worked very hard all his life, very hard.”
“Repetition, repetition, balance, his jerky walk. When he first started eating on his own, his face looked like Jackson Pollock by the end. But he does it, he feeds beautifully. I’m proud of him every day, because I think he’s magical.”
Colin also described seeing his son take his first steps just before his fourth birthday.
Detailing the “profound” moment to People, Colin said: “I knew they (James’ carers) were working on getting him to walk. And I just stood there, and she let him go, and he just came to me.”
“It was very profound. It was magical.”
“I’ll never forget the look of determination on his face as he walked toward me. He took about six steps and I started crying.”
James’ condition is severe enough that he is unable to speak and requires the assistance of a live-in carer to carry out his daily tasks.
When James was four, Colin went public with his Angelman syndrome, saying his son had shown “amazing courage” in the face of his condition.
Colin and James’ mother Kim, 52, dated him from 2001 to 2003; seen in 2003 in Los Angeles
He shares his youngest son Henry with his Ondine co-star, Polish actress Alicja Bachleda-Curus, 41, whom he dated from roughly late 2008 to early 2010; they are seen together in 2010.
Shortly before James turned 18, Colin and Kim applied for guardianship of him, noting that he still needed help with tasks such as dressing and preparing meals.
He later revealed that he and James’ mother make sure to share the smaller “victories” and enjoy the accomplishments no matter what age they occur, including James’ first words at six, being able to feed himself at 19, and controlling his seizures.
Colin has maintained a very private life and hasn’t spoken about his son in much detail until recently, though he told InStyle that he first decided to “speak publicly about the pride and joy I felt for our son” while attending the 2007 Special Olympics.
She said: “He has enriched my life, but I don’t want to minimize the trials that so many families go through – the fear, the dismay, 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.”
Speaking about being a father to a disabled child, the Hollywood star said James was the main reason he was able to stay sober.
Colin and James’ mother Kim dated from 2001 to 2003. He later had Henry with his Ondine co-star Alicja, whom he dated from roughly late 2008 to early 2010.