Colin Farrell is opening up about his son’s rare neurogenetic disorder.
The 48-year-old recalled the moment James was diagnosed with Angelman syndrome when he was just two-and-a-half years old.
“One of the characteristics of Angelman syndrome is outbreaks of laughter,” the Irish actor told People in an interview published on Thursday. “And the doctor saw that James was laughing a lot and doing this movement [he waves his hands].”
The tests came back positive for Angelman, to which the doctor told Farrell, “At least we had a diagnosis.”
“I remember the first two questions I asked were, ‘What’s the life expectancy and how much pain is involved?’” the “Sugar” star continued. “And the doctor said, ‘Life expectancy, as far as we can tell, is the same for you and for me, and pain, no.’”
Although there is no pain involved, Angelman causes delayed development, problems with speech and balance, and mental disability, according to the Mayo Clinic.
It can also cause seizures, which is “one of the things that parents struggle with greatly,” explained Farrell.
“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,” he shared with the outlet. “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.”
Farrell, also a father to his son Henry, 15, with ex Alicja Bachleda-Curuś, noted that he didn’t notice anything out of the ordinary with his firstborn.
“James was a very silent baby,” he recounted. “And I just thought I’d hit the lottery, and he was chill — and he’s anything but. 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?’”
Although James would cry if he was upset, the Golden Globe winner mentioned that “he wasn’t hitting benchmarks. 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,” Farrell — who shares James with ex Kim Bordenave — admitted, “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.”
However, after receiving a proper diagnosis, Farrell was able to watch his eldest son, now 20, make great progress.
James’ occupational therapist approached the “Miss Julie” star two weeks shy of his son’s fourth birthday and said, “James has something to show you.”
“I knew they were working on walking and I stood over there, and she let him go, and he just came to…,” Farrell recalled to People as he collected himself. “I mean, 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.”
Many children with Angelman syndrome are unable to walk, “so to see those first steps was just . . . I’ll never forget it,” he continued. “It was so overwhelmingly beautiful.”
These days, Farrell is looking to give back to other families in similar positions by creating the Colin Farrell Foundation, which aims to support adult children with intellectual disabilities.
As James’ 21st birthday approaches in September, the “Gentlemen” star realizes how the system ages out kids with disabilities.
“Once your child turns 21, they’re kind of on their own,” noted Farrell. “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.”
But the “Banshees of Inisherin” alum is looking to change those rules and make an impact by helping young adults with intellectual disabilities receive the care they need through advocacy, education, and innovative programs.
Farrell hasn’t spoken about his non-profit publicly before now.
“Obviously, the only reason I’m speaking is I can’t ask James if he wants to do this,” he confessed.
Farrell likes to think that James would be more than encouraging of his dad’s newest venture.
“I can’t discern a particular answer from him as to whether he’s comfortable with all this or not,” he expressed, “so I have to make a call based on knowing James’s spirit and what kind of young man he is and the goodness that he has in his heart.”
And when it comes to promoting the foundation with a photoshoot, Farrell feels his son would be on board if he knew it would do good.
“If James knew getting his photograph in the back garden with me,” he explained, “which is not my favorite thing to do, if us doing this could help families and other 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.’”
“So that’s why we’re doing it,” stated Farrell. “This is all because of James — it’s all in his honor.”And the “Batman” lead has one wish for his son. As he put it, “I want the world to be kind to James. I want the world to treat him with kindness and respect.”
