Colin Farrell Shared a Rare Look at Life With His Son With Angelman Syndrome: ‘I’m Proud of Him Every Day'
Colin Farrell is giving fans a look into how he cares for his 20-year-old son, James, who has a rare neuro-genetic disorder called Angelman Syndrome.
In a People cover story and video feature, Farrell opened up about James’ symptoms and diagnosis as well as what life is like for him now as a young adult — and how his son has inspired him to start the Colin Farrell Foundation, launched this month, to help people with disabilities and their families.
“I’m proud of him every day,” Farrell said of James. “I just think he’s magic.”
The first signs of James’ condition came early on, although Farrell said he didn’t initially recognize them for what they were. As a baby, he was very quiet, which Farrell thought meant he’d “hit the lottery: I have a chill child who’s not gonna keep me up at night!”
As James got older, he wasn’t hitting language or movement benchmarks typical of babies his age, including the ability to sit up on his own or crawl. “We knew that something was up, [like] developmental delays,” Farrell said.
James, whom Farrell shares with ex Kim Bordenave, was initially diagnosed with cerebral palsy at age one — a “common misdiagnosis” at the time, Farrell says. A year later, though, a pediatric neurologist noticed other telltale symptoms, like frequent outbursts of laughter. Blood testing confirmed that James had Angelman syndrome, which is caused by the UBE3A gene not functioning normally, according to the Angelman Syndrome Foundation.
Other symptoms of the condition include developmental delays, sleep problems, lack of speech, and seizures, which James also experienced. “I’ve been in the back of ambulances, I’ve been in the hospital with him,” Farrell said. “Thankfully he hasn’t had one in 10 or 11 years.” His current symptoms, Farrell says, include being nonverbal and some struggles with “balance [and a] jerky gait.”
When James will turn 21 in September, Farrell said he’ll age out of many support systems that are fundamental for families of kids with disabilities. “Once your child turns 21, they’re kind of on their own,” he explained. “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.” (It was likely with similar concerns in mind that Farrell and Bordenave petitioned to be James’ co-conservators in 2021.)
Now, Farrell hopes to make a difference through the Colin Farrell Foundation. “For years I’ve wanted to do something in the realm of providing greater opportunities for families who have a child with special needs to receive the support that they deserve… and basically the assistance in all areas of life,” Farrell explained. “I obviously have a certain amount of means, having had a career in film for 20-plus years now, and we still struggle with finding the kind of support that James deserves.”
According to its website, the Foundation will look to address the “lack of affordable and accessible community-based housing and day programs” for those with intellectual disabilities, increase wages for paid caregivers, increase funding for disability-focused Medicaid programs, and establish a camp for those with intellectual disabilities and their families to relax and spend time together.
It’s an ambitious endeavor, but one Farrell clearly believes in deeply, “It’s all because of James. It’s all in James’ honor,” he said. “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. I mean, I can. I speak to James as if he’s 20 and has perfect fluency with the English language and age-appropriate cognitive ability. But I can’t discern a particular answer from him as to whether he’s comfortable with all this or not, 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.”
It’s the first time Farrell has talked extensively about James’ life and condition, though he has been a supporter of the disability community for decades. “The struggles of a child with special needs can be so brutal that they can tear at the very fabric of your heart, but the love shared and the pure strength and heroism observed is the needle and thread that mends all tears,” he told Today at an annual summit and gala for Angelman syndrome research in Chicago hosted by the Foundation for Angelman Syndrome Therapeutics in 2017. He also walked with athletes in the Special Olympics when they were held in Ireland in 2003, per the CFF website.
Still, Farrell is “very private” about his family life and understandably protective of James. “I want the world to be kind to James,” he told People. “I want the world to treat him with kindness and respect.”
He made the decision to open up about their lives as a way to promote the Foundation — and hopefully improve the lives and futures of adults with intellectual disabilities like James. Farrell said, “I choose to believe that if James knew that doing this could help families and could help other children and young adults who live with special needs, James would say, ‘Dad, what are you talking about? Why are you even asking me? It’s a no-brainer.'”
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