It’s hard to maintain any privacy when you’re a celebrity of Colin Farrell’s stature.
But the In Bruges star kept a deeply personal secret until just a few years ago.
Farrell’s 8-year-old son, James, was born with Angelman syndrome (AS).
Among other challenges, children with the rare disorder can’t speak and experience some motor difficulties. They are also prone to debilitating seizures.
But despite their struggles, the children are also indefatigably joyful and loving.
“(James) has made my life so much richer and so much more worthwhile and has given it such meaning that my life alone never had,” Farrell said.
Farrell shared the story of why he decided to go public about James at the Foundation for Angelman Syndrome Therapeutics (FAST) annual gala Saturday at the Hyatt Regency in Chicago.
Darien mom Paula Evans, whose 7-year-old daughter, Ainsley, has AS, founded FAST to raise awareness and help fund research into a cure for the syndrome. Until recently, it was a little understood disorder often misdiagnosed as Cerebral palsy or autism.
Farrell, a longtime supporter of the four-year-old organization, was the guest of honor at this year’s gala. He also sponsored 100 families so they would be able to attend the benefit, one of the few nights each year when AS parents get to be around others who share their experiences.
With the scrutiny Farrell faces as a celebrity, he said he used to do everything he could to shelter James from the public.
“But it backfired on me,” he said.
A few years ago Farrell was on a Special Olympics panel in China. Someone asked why he was involved with the organization.
Still determined to protect James’ privacy, he gave a pat answer.
“I found myself not speaking about what I wanted to really speak about so much,” Farrell said.
That night he said he went to bed devastated that he hadn’t been honest.
“I just thought, ‘Well, maybe it’s time. I just have to speak about him. And once I’m not protecting him, what’s going to happen if I speak publicly about his condition? Nothing really,’” Farrell said.
He called his son’s mother, and the next day, for the first time, he spoke about James during an interview.
“The bottom line is he’s my boy,” Farrell said.
Evans applauded Farrell’s decision to share his story.
“Coming to the decision to go public and speak publicly about James and Angelman syndrome is not a decision that came either lightly or without much consideration,” she said. “Colin has nothing to gain here. He wants to help other children. Every time he speaks about Angelman, another child gets accurately diagnosed.”
Farrell spoke about FAST, as well as James, this summer while on the Late Show with David Letterman.
Within minutes, Evans said her email account lit up from people making donations to FAST.
Researchers have figured out how to cure AS in mice by activating a single gene. Many believe funding for more research is the only roadblock for finding therapies that will work in humans as well.
The idea of a cure has become somewhat controversial in the AS community, as some parents argue that a cure implies something about their children is broken.
Farrell offered his perspective about therapies that could improve AS symptoms.
“It doesn’t mean that I think there’s anything wrong with James,” he said. “It doesn’t mean I have any doubts about the foundation of his spirit. The foundation of his heart and the foundation of his mind are better and purer than mine will ever be. But there are aspects to his physical self that don’t do him any favors.”
Farrell said James has taught him immeasurable lessons, helping him to grow as a parent and a person.
“He’s kind of lifted me in that sometimes tremulous hand of his,” Farrell said. “I ain’t saying I’m a great man or nothing, but I’m getting to be about as good a fellow as I’m going to be. A lot of the reason is James has come into my life and gifted me the opportunity to look outside myself and to watch his every move, to watch his every difficulty and to watch his insurmountable spirit just forge ahead in life.”
Read Angelman Syndrome Community Finds Hope in Local Group's Gala for more about the benefit.