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Colin Farrell’s devastating fear for son with rare genetic disorder as ‘I won’t be there’

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Colin Farrell has shared his biggest fear for his son James’s future as he revealed the heartbreaking reason behind his decision to launch a new foundation in his honour

Colin Farrell has opened up about his hopes and fears for his son James, sharing an emotional insight into their family life and the future he desperately wants to secure for him.

The Hollywood actor, 50, is preparing to launch a new foundation inspired by his eldest son, who has spent two decades overcoming challenges linked to a rare genetic condition.

Speaking to People, Colin reflected on the extraordinary progress James has made throughout his life, while explaining why he believes more needs to be done to support adults with developmental disabilities.

James, 20, has Angelman syndrome, a rare neurogenetic disorder that affects mobility, speech and cognitive abilities.

Reflecting on his decision to establish the Colin Farrell Foundation, the actor explained that his son reaching adulthood had prompted him to think carefully about what lies ahead.

“I suppose the reason why we’re establishing the foundation now is that James is of an age – he’s 20 – and he’s had an extraordinary 20 years,” he said.

“He works incredibly hard to achieve the most, quote unquote, menial of things, the most typical of things – benchmarks that we all experience as typical human beings who don’t have any cognitive issues or developmental delays.”

Praising James for everything he has accomplished, Colin added: “James has fought very hard to achieve certain benchmarks, and he’s done incredibly well. He’s a really well-adjusted, really happy young man. He’s extraordinary, but now we’re looking towards the rest of his life. What’s the next chapter of James’s life look like?”

However, it is the prospect of his son eventually having to navigate life without his parents that weighs heavily on the actor.

“My fear would be, God forbid, if and when something happens to James’s mother or to me, that James would be 30 or 40, and then he would have to go somewhere, into some kind of institute or some kind of residential care, and there’d be nobody there to call over, take him out and have lunch with him and all that.”

Colin hopes his foundation can help change the options available to families caring for adults with intellectual disabilities, offering advocacy, education and programmes designed to encourage greater independence.

He also wants to establish a summer camp as part of the initiative, giving families more opportunities to find suitable support for their loved ones.

“But there are very, very few places, and so I want to change that,” he explained. “I want to be part of that, with the great team we already have behind this foundation.”

“Building a summer camp will be part of the foundation as well. That would be a big one for me to leave behind, and it’s all because of James. You know, it’s all in James’s honour.”

The actor admitted the thought of missing so much of his son’s future was particularly difficult to contemplate.

“It’s a terrifying thought that I’ll miss the last, you know, 40 years or 50 years of his life, just because I won’t be there to shepherd and protect him.”

Ultimately, Colin wants James to have a life filled with security, companionship and opportunities to enjoy the things that make him happy.

Describing his hopes for the future, he said: “But what would the perfect life look like? You know, just a life of connection, where James, in the last 10, 20, 30 or 40 years of his life, will be somewhere where he feels like he belongs, where he feels safe, and where he can garden and watch movies and swim in the pool and go out to the beach and just have a full, meaningful and connected life.”

He added: “You know, that’ll be the dream.”

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