Successful Irish actor Colin Farrell celebrates more than his acting career. He’s life has been forever changed by his sobriety and his two sons, James and Henry. Farrell recently shared more of what life is like with James, who was diagnosed with Angelman syndrome at age two.
“Everything is magnified when you have a child with special needs,” said Farrell.”
Colin Farrell Opens Up About His Son, James, Who Lives with Angelman Syndrome
Despite Farrell’s fame and onscreen success, his home has always been a “safe place,” free from cameras and publicity. But, for a recent cover story for PEOPLE, Colin Farrell decided to pull back the curtain.
“If James knew that doing this could help families and could help other children and young adults who live with special needs, James would say, ‘Dad, what are you talking about? Why are you even asking me? It’s a no-brainer.'” James would clearly want to help others.
“James was a very silent baby. He didn’t coo. He didn’t make any sounds at all,” Farrell shared. “I just thought I’d hit the lottery. I thought I have a chill child who’s not going to keep me up at night.”
He didn’t know at the time that James had a severe debilitating syndrome.
“But then, he wasn’t hitting benchmarks. He wasn’t sitting up. He continued, “He wasn’t crawling.” James was about 18 months old when he was diagnosed, initially and incorrectly, with cerebral palsy.
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About a year later and after extensive testing, another pediatric neurologist diagnosed him with Angelman syndrome.
“One of the characteristics of Angelman syndrome is outbreaks of laughter.” Farrell explained, “They call it inappropriate outbreaks of laughter, but I don’t know if there’s such a thing as inappropriate outbreaks of laughter if it comes from a sincere place.”
While it was hard news to hear, Farrell remembers the relief of receiving an actual diagnosis. From there, parents and medical personnel can work together on a plan for the child to reach his or her goals.
“I asked at the time—what’s the life expectancy and how much pain is involved?” said Farrell.
The doctor explained that the life expectancy, as far as they knew then, was the same for those without the syndrome. There also is no expected pain. The greatest challenge parents often face is the seizures that accompany Angelman syndrome. At the time of the interview, James hadn’t had a seizure in 10 or 11 years.
With James’ special needs, he was often behind developmentally. Farrell recalled when James took his first steps. He and Deborah, his medical aid, were working quite a bit and Deborah told Farrell that James had something to show him.
Just shy of James’ fourth birthday, Deborah stood him up and let go. “It was magic. I mean, I’ll just never forget and there’s theface of determination on him as he just walked towards me. He took six steps, and I burst into tears.”
Some people with Angelman syndrome are bound to a wheelchair, while others are running around. James seems to be somewhere in the middle, according to Farrell.
Farrell and James spend a lot of time together. They play ball, swim, and hang out. James loves to watch movies and eat cheeseburgers.
Because of the nature of his work, Farrell hired live-in medical help. It provides him the freedom to work, and it gives James a sense of independence as he enjoys going to the beach or Universal Studios with a companion at all times.
“He has a good life,” Farrell shared. “He’s a happy young man.”
Help for Other Families of Those With Special Needs
Those with special needs require a great deal of care and intentionality each moment of each day. It can be draining on individuals and families. When a child with special needs grows up, he or she may want as much independence as they’re able to gain. But, they often need extra help.
RELATED: The Unseen Life of Special Needs Parents
“James has had an extraordinary 20 years. He works incredibly hard to achieve the most ‘menial’ of things, the most typical of things.”
Farrell and James are looking at the next chapter of James’ life and what that could look like.
They’re starting a foundation to “look at residential potential for families with young adults who are ready to go out into the world and have a greater sense of community and connection.”
The Colin Farrell Foundation empowers “individuals and families living with intellectual disabilities through education, advocacy, and innovative programs.”
Part of the dream includes respite for parents, too. “Parents of children with special needs, they find it hard to do nice things for themselves,” admitted Farrell.