When James was 18 months old and had not yet reached developmental stages such as crawling, standing or sitting up on his own, Colin thought something was wrong.
James was initially diagnosed with cerebral palsy, a common misdiagnosis given the similar symptoms to Angelman syndrome.
A year later, a pediatric neurologist diagnosed him with Angelman syndrome. He spent more time with James and noticed that he exhibited a characteristic of the disorder known medically as “inappropriate laughing fits.”
Frequent seizures are also common in Angelman syndrome. Farrell said James suffered many seizures in his younger years that resulted in ambulance rides, but has not had one since his last seizure 10 or 11 years ago.
Farrell, who fathered James in 2003 with American model Kim Bordenave, has a second son, 14-year-old Henry, with his ex, Polish actress Alicja Bachleda-Curuś.
The In Bruges Actor decided to share his family story in hopes of raising awareness through his new Colin Farrell Foundation, an organization dedicated to James that provides support to families and children with intellectual disabilities.
“Once your child turns 21, they’re more or less on their own,” he told the media outlet, referring to the maximum age in the U.S. at which special assistance programs and services are no longer available to families and children with special needs.
He explained:
“All the safety precautions that are taken, special education, all of that is taken away, and so you’re left with a young adult who should be an integrated part of our modern society and is mostly left behind.”
Farrell was inspired to start his foundation after coming to the disturbing realization that he and Bordenave would not be there to care for James forever, as his overall life expectancy is not affected by his condition.
“The thought that I would miss the last 40 or 50 years of his life because I won’t be there to watch over him and protect him is terrifying,” Colin said, adding that he hopes for James that he will have “a life of connection” and that once his parents are gone, James will be “somewhere where he feels he belongs and feels safe.”
One moment that particularly touched Farrell was when he remembered witnessing James’ first steps two weeks before his fourth birthday.
It was a memory Farrell described as an “overwhelmingly beautiful” moment. The actor and his family had previously been warned that people with Angelman syndrome would likely not be able to walk.
“I will never forget the determined look on his face as he walked towards me. He took about six steps and I burst into tears,” he said, adding:
“I am proud of him every day because I just think he is magical.”
Farrell expressed gratitude that, because of his successful career, he has a live-in caregiver who has cared for James for 18 years, allowing Farrell to “move freely and work” when father and son aren’t engaged in their daily activities like watching movies, playing ball, swimming or eating In-N-Out burgers together.
“It’s been great for James because it gives him this autonomy, he knows I’m there. He goes to the beach, he goes to Universal Studios. He has a good life. He’s a happy young man,” Farrell noted.
He noticed that as an adult, James works harder than anyone he knows, including himself, because his son is very determined.
“It takes James 90 seconds to take a T-shirt off,” he said. “But he takes a T-shirt off; you’re sitting there with him.”
“If anything, it also gives me the ability to see man, the human body and life as a miracle because I see how much he struggles with things that I would never have thought about and that many of us take for granted.”
As for the future, however, Farrell is very worried about James being left alone.
“My fear would be, God forbid, if something happened to James’ mother or to me, James would be 30 or 40 and would need somewhere to stay,” Colin said.
“When you’re 30 or 40, you end up in some kind of institution or nursing home, and then there’s no one there to come over, go out with you, have lunch with you, and so on.”
When asked what he was most grateful for, Farrell, who was known for his partying past, like his fellow actor Jamie Lee Curtis, answered: for his sobriety.
“James was about two years old when I got clean, when I got sober, and he was a big, big part of me putting down the bottle, a big part of it,” he said.
“Because I was in no condition to be a friend, let alone the father of a child with such high standards.”
“Without my sobriety, I wouldn’t be able to be there for James, enjoy the wonders of his life, and support him the way I feel capable of doing.”
You can see the full interview here: People Here.
– YouTubeyoutube.be
Farrell said he has strived for years to “do something to provide better opportunities for families with a child with special needs to get the support they deserve, basically the help in all areas of life, whether it’s education, intervention, therapy or social settings where their child feels like they belong” so that families and children with special needs “can find a world of meaning and a life of connection for their children.”
According to the Colin Farrell Foundation website, the organization is committed to “transforming the lives of people and families with intellectual disabilities through advocacy, education, awareness-raising and innovative programs.”
“People with intellectual disabilities face numerous crises that negatively impact their health and well-being.”
You can support the Colin Farrell Foundation’s mission to raise awareness “of the challenges and crises that people with intellectual disabilities face every day” by making a donation here.
