By Yi-Jin Yu, Good Morning America
Colin Farrell shared an update on his eldest son James, who has a genetic disorder called Angelman syndrome, in a new interview that aired Monday on “Good Morning America”.
Farrell said his son’s Angelman syndrome doesn’t necessarily look the same as how it manifests in others who have the genetic disorder.
“The spectrum is pretty broad for our children who have Angelman syndrome. Some have words. James is nonverbal. Some can move around perfectly. James is not one of those, but he’s ambulatory,” Farrell said in an interview with ABC News’ Deborah Roberts in Chicago, where his nonprofit foundation, The Colin Farrell Foundation, held its Winter Ball gala on Dec. 7.
Farrell described James, now 21, as a “beautiful boy who has differences.”
“He’s great fun. He’s really cheeky. He’s bold,” Farrell said. “He’s worked very hard all his life … he has been doing occupational, physical therapy, special needs exercises since the time he was 3.”
Farrell’s son James inspired The Colin Farrell Foundation, which supports people living with intellectual disabilities, as well as their families and loved ones.
“We have to help people understand how dire the situation is for so many,” Farrell, who serves as the foundation’s president, said during a speech at the group’s Dec. 7 gala.
Angelman syndrome, a rare neurogenetic disorder, affects 1 in 12,000 to 20,000 people. It impacts a person’s nervous system, according to the National Institutes of Health, and can lead to delayed development, intellectual disability, severe speech impairment, problems with movement and balance, and seizures.
Over the years, Farrell has juggled caring for both James and his younger son Henry.
“I’m on a unicycle with, you know, bowling pins. But we — I think we’re a good thing,” he said, speaking with Roberts.
As a successful actor, Farrell has been able to support James’ specific needs and said he recognizes how fortunate he and his family are in securing care for his son.
“We have been able to provide a certain amount of support for James that very few families can provide, you know, so that is not lost on me at all,” Farrell said. “I don’t think he understands abstractions. I don’t believe James understands the concept of time or calendar dates, so James in many ways exists in a state of grace. He’s just, he’s in the forever now. It’s really quite amazing.”
What to know about Colin Farrell and his kids
Farrell also spoke with Roberts about the need for support for those with intellectual disabilities into adulthood, given that once they reach the age of 21, as James has, support can shift dramatically.
“The bottom falls out. There’s no support systems, you know, as far as therapies and after-school care and all of that,” Farrell said. “And that’s when parents are just like, ‘What do I do now?’ They are just in the dark, begging for support and help. They’re subsisting on $45,000 or $63,000 a year. They’re trying to keep their life together.”
Farrell said he hopes his foundation can make a difference for everyone, including by creating access to affordable community housing and day programs.
“It means a lot to me. I mean, my son means a lot to me. What we’re trying to do, ultimately, is to try and raise awareness,” Farrell said.
“I just love our community,” he added. “I just love them all, yeah. I love seeing our kids. Everyone dreams of having a child who’s special, and then you’re told your child is special in a particular way, and the dream turns into a nightmare, and you feel lost, and you don’t know what to do, and you don’t know where to turn. And that’s one of the primary goals of this foundation that I’ve established, is to afford families and their loved ones an opportunity for just another resourc
Courtesy of ABC News. Click here to view on the ABC website with additional photos.
To view Jake Hamilton’s interview with Colin Farrell, click here.