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

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

“James was a very quiet baby. And I just thought I’d hit the lottery and he was relaxed – and he’s anything but,” says Farrell, 48, who is also father to son Henry, 15, who he shares with his ex partner i Ondine costar Alicja Bachleda-Curuś. “If James had been my second child and not my first, I would have known earlier because when Henry was born and I heard him cooing, I thought, ‘A baby is supposed to coo?'”

Cliff Watts

Although James would cry when he was upset, “he wasn’t hitting the benchmarks. He couldn’t sit. He wasn’t crawling,” Farrell recalls. “I think he was a year and a half old when we took him in for a proper checkup and he was diagnosed with cerebral palsy. It was a common misdiagnosis, because he shared a lot of the same characteristics. And that was bad 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 disabilities. “One of the characteristics of Angelman syndrome is fits of laughter,” says Farrell. “And the doctor saw that James was laughing a lot and doing that movement [he waves his hands].”

Cliff Watts

When the test came back positive for Angelman, “at least we had a diagnosis,” says the actor. “I remember the first two questions I asked were, ‘What is 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 me, but the pain is not.'”

But Angelman is a seizure condition “and that’s one of the things that parents really struggle with,” Farrell adds. “Luckily, James hasn’t had a seizure in the last 10 or 11 years, but I’ve been in the ambulances, I’ve been in the hospital with him. I’ve had Diastat [a sedative] into his rectum to pull him out of a seizure that lasted more than three minutes. Finding the right amount of medicine that has no side effects — it’s all very tricky business.”

Now the actor is launching the Colin Farrell Foundation to support adult children with intellectual disabilities 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 because I can’t ask James if he wants to do it,” he says.

Courtesy of Colin Farrell

“I mean, I can. I talk to James as if he were 20 years old and perfectly fluent in English with age-appropriate cognitive abilities. But I can’t get a concrete answer from him as to whether all this suits him or not, so I have to decide based on knowing James’ spirit and the kind of young man he is and the goodness he has in him. heart.”

James has “worked so hard, so hard all his life,” Farrell adds. “Repetition, repetition, balance, his jerky walk. When he first starts feeding, his face ends up looking like Jackson Pollock. But he gets into it, he feeds beautifully. I’m proud of him every day, because I just think he’s a magician .”

Cliff Watts

As for the foundation, Farrell “has wanted to do something for years in the area of ​​giving families who have a child with special needs more opportunities to get the support they deserve, really help in all areas of life,” he said. he says.

James, and those like him, “earned the right to a greater degree of individuality and autonomy in life, and a greater degree of community.”

For more information or to find out how you can offer support, visit www.colinfarrellfoundation.org.

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Source: HIS Education