Colin Farrell has revealed how son James was heartbreakingly misdiagnosed with cerebral palsy before doctors eventually confirmed he was suffering from Angelman syndrome.
The Phone Booth actor, 48, discussed his first-born son's condition in a new interview and said medical advice was sought after James, now 20, missed developmental milestones and struggled to sit up or crawl as a baby.
Angelman syndrome is a rare neuro-genetic disorder that primarily affects the nervous system, and causes severe physical and intellectual disability.
Colin - who shares James with ex Kim Bordenave - explained how many sufferers of the rare syndrome are often misdiagnosed with cerebral palsy due to both conditions having similar symptoms.
He told People: '[James] 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'.
Colin Farrell, 48, has revealed how his James was misdiagnosed with cerebral palsy before doctors eventually confirmed he was suffering from Angelman syndrome
The Phone Booth actor said medical advice was sought after James, now 20, missed developmental milestones and struggled to sit up or crawl as a baby
Angelman syndrome is a rare neuro-genetic disorder that primarily affects the nervous system, and causes severe physical and intellectual disability
Cerebral palsy is the name for a set of conditions affecting movement and co-ordination stemming from a problem with the brain that takes place before, during or soon after birth.
Difficulty speaking, swallowing or seeing — along with learning difficulties — can also be symptoms.
Colin said: 'It was a common misdiagnosis, because it shared a lot of the same characteristics. And that was a downer for sure.'
The Oscar nominee revealed that only when James was about two and a half years old, that a pediatric neurologist suggested he be tested for Angelman syndrome.
Recalling the moment he received the diagnosis, he shared: 'I remember the first two questions I asked were, "What’s the life expectancy and how much pain is involved?"'
'And the doctor said, "Life expectancy, as far as we can tell, is the same for you and for me, and pain, no."'
A doctor had noticed an unusual symptom that prompted him to test for Angelman syndrome.
With Colin explaining: '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.
Colin - who shares James with ex Kim Bordenave - explained how many sufferers of the rare syndrome are often misdiagnosed with cerebral palsy due to both conditions having similar symptoms
Colin said: 'It was a common misdiagnosis, because it shared a lot of the same characteristics. And that was a downer for sure (James pictured with his mother Kim)
The Oscar nominee revealed that only when James was about two and a half years old, that a pediatric neurologist suggested he be tested for Angelman syndrome (Seen with younger son Henry, 15, in 2023)
Angelman syndrome is also characterized by seizures, which Colin - who also shares who also shares son Henry Tadeusz, 15, with Polish actress Alicja Bachleda-Curus, 41 - 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.
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.'
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
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.
What is Angelman syndrome?
Angelman syndrome is a genetic condition that affects the nervous system and causes severe physical and learning disabilities.
A person with Angelman syndrome will have a near-normal life expectancy, but they will need support throughout their life.
Characteristics of Angelman syndrome
A child with Angelman syndrome will begin to show signs of delayed development at around six to 12 months of age, such as being unable to sit unsupported or make babbling noises.
Later, they may not speak at all, or may only be able to say a few words. However, most children with Angelman syndrome will be able to communicate using gestures, signs or other systems.
The movement of a child with Angelman syndrome will also be affected. They may have difficulty walking because of issues with balance and co-ordination (ataxia). Their arms may tremble or make jerky movements, and their legs may be stiff.
Several distinctive behaviours are associated with Angelman syndrome. These include:
* frequent laughter and smiling, often with little stimulus
* being easily excitable, often flapping the hands
* being restless (hyperactive)
* having a short attention span
* trouble sleeping and needing less sleep than other children
* a particular fascination with water
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