Colin Farrell is giving fans a glimpse into how he cares for his 20-year-old son, James, who suffers from a rare neurogenetic disorder called Angelman Syndrome.
In a People cover and video featureFarrell talked about James’ symptoms and diagnosis, as well as what his life is like now as a young adult — and how his son 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 magical.”
The first signs of James’ condition appeared early, though Farrell said he didn’t recognize them for what they were at first. As a baby, he was very quiet, which Farrell believed meant he would “hit the lottery: I have a cold kid who won’t keep me up at night!”
As James grew, he did not achieve language or movement benchmarks typical of babies his age, including the ability to sit up on his own or crawl. “We knew something was up, [like] developmental delays,” Farrell said.
James, who Farrell shares with ex Kim Bordenav, was initially diagnosed with cerebral palsy at the age of one — a “common misdiagnosis” at the time, Farrell says. A year later, however, a pediatric neurologist noticed other telltale symptoms, such as frequent bursts of laughter. The blood test confirmed that James had Angelman syndrome, which is caused by the UBE3A gene not working properly, Angelman Syndrome Foundation.
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Other symptoms of the condition include developmental delays, sleep problems, lack of speech and seizures, which James also experienced. “I was in the back of the ambulances, I was in the hospital with him,” Farrell said. “Luckily 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 turns 21 in September, Farrell said he will age out many of the support systems that are fundamental to families of children with disabilities. “Once your child turns 21, they’re kind of on their own,” she explained. “All the safeguards that have been put in place, special classes, that all disappear, so you’re left with a young adult who should be an integral 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 applied to be James’ caretakers in 2021.)
Now, Farrell hopes to make a difference through the Colin Farrell Foundation. “For years I’ve wanted to do something in the area of giving families who have a child with special needs greater opportunities to get the support they deserve … and basically the help in all areas of life,” Farrell explained. “Obviously I have some means, having had a career in film for over 20 years now, and we’re still struggling to find the kind of support that James deserves.”
According to her Websitethe Foundation will seek to address the “lack of affordable and accessible housing and community day programs” for people with intellectual disabilities, increase wages for paid caregivers, increase funding for disability-focused Medicaid programs, and create a camp for people with mental retardation and their families to relax and spend time together.
It’s an ambitious undertaking, but one Farrell clearly believes deeply: “It’s all down to James. It’s all in honor of James,” he said. “It’s the first time I’ve spoken about it and obviously the only reason I’m speaking is because I can’t ask James if he wants to do this. I mean, I can. I talk to James like he’s 20 and he has perfect English fluency and age-appropriate cognitive ability. But I can’t discern a specific answer from him as to whether he’s comfortable with all of this or not, so I have to make a call based on knowing James’ spirit and what kind of young man he is and the goodness in his heart .”
It’s the first time Farrell has spoken at length about James’ life and condition, although he has been an advocate for 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 you share and the pure strength and heroism seen is the needle and thread that mends all tears “, he said. Today at an annual Angelman Syndrome Research Summit and Gala in Chicago hosted by the Foundation for the Therapeutics of Angelman Syndrome; in 2017. He also walked with athletes in the Special Olympics when they were held in Ireland in 2003, according to the CFF website.
However, Farrell is “very private” about his family life and is understood to be protective of James. “I want people to be kind to James,” he said People. “I want people 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 this could help families and could help other children and young adults living with special needs, James would have said, ‘Dad, what are you talking about? Why are you asking me; Its funny”.
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