Colin Farrell Recalls Painful First Question He Asked Doctor After Son’s Special Needs Diagnosis (Exclusive)

The actor is launching the Colin Farrell Foundation to support adult children who have intellectual disability through advocacy, education and innovative programs

When Colin Farrell's son James was born, the actor admits he initially didn't notice any symptoms that would lead to James's eventual diagnosis of Angelman syndrome.

"James was a very silent baby. And I just thought I’d hit the lottery, and he was chill — and he’s anything but," says Farrell, 48, who is also dad to son Henry, 15, whom he shares with former partner and Ondine costar Alicja Bachleda-Curuś. "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?'"

While James would cry when he was upset, "he wasn’t hitting benchmarks. He couldn’t sit up. He wasn’t crawling," Farrell recalls. "I think he was a year and a half when we took him to get really checked out, 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."

It wasn't until James was about two and a half years old that a pediatric neurologist suggested he be tested for Angelman syndrome, a rare neurogenetic disorder that causes severe physical and intellectual disability. "One of the characteristics of Angelman syndrome is outbreaks of laughter," says Farrell. "And the doctor saw that James was laughing a lot and doing this movement [he waves his hands]."

When the test came back positive for Angelman, "at least we had a diagnosis," the actor says. "I remember the first two questions I asked were, 'What’s the life expectancy and how much pain is involved?' And the doctor said, 'Life expectancy, as far as we can tell, is the same for you and for me, and pain, no.'"

But Angelman is a seizure condition "and it’s one of the things that parents struggle with greatly," adds 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. 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."

Now the actor is launching the Colin Farrell Foundation to provide support for adult children who have intellectual disability through advocacy, education, and innovative programs. “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,” he says.

“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.”

James "has worked so hard all his life, so hard," Farrell adds. "Repetition, repetition, balance, his jerky gait. When he started feeding himself for the first time, his face looks like a Jackson Pollock by the end of it. But he gets it in, he feeds himself beautifully. I’m proud of him every day, because I just think he’s magic."

As for the foundation, Farrell has "for years 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, basically the assistance in all areas of life," he says.

James, and those like him, have "earned the right to have a greater degree of individuality and autonomy on life, and a greater degree of community."

For more information or learn how you can offer support, visit www.colinfarrellfoundation.org.

For more People news, make sure to sign up for our newsletter!

Read the original article on People.