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Colin Farrell Emotionally Opened Up About The “Terrifying” Reality Of Having A Child With Disabilities In His First Interview About His 21-Year-Old Son Who Has Angelman Syndrome

By Stephanie Soteriou,

1 day ago

In 2003, Irish actor Colin Farrell welcomed a baby boy, James, with American model Kim Bordenave. When James was 4 years old, Colin revealed that his son had been diagnosed with Angelman syndrome , a rare genetic disorder that causes intellectual and developmental delay.

https://img.particlenews.com/image.php?url=1F34MM_0uraiNDd00 — James will turn 21 years old next month, and Colin, who also shares a 14-year-old son, Henry, with his ex Alicja Bachleda-Curuś, has decided to open up about their life in a bid to raise awareness for his new venture, the Colin Farrell Foundation .
In an interview with People , Colin explained that in the United States , the cut-off age for the support systems provided for families with children who have additional needs is 21.
“Once your child turns 21, they’re kind of on their own,” he told the publication. “All the safeguards that are put in place, special ed classes, that all goes away, so you’re left with a young adult who should be an integrated part of our modern society and more often than not is left behind.”
This, coupled with the realization that he and Kim won’t be around forever to advocate and care for their son, is what inspired Colin to launch the foundation, which will provide support for adults who have intellectual disabilities.
Alberto E. Rodriguez / Getty Images

“It’s a terrifying thought that I’d miss the last 40 years or 50 years of his life, because I won’t be there to shepherd and to protect,” Colin said, adding that his hope for James would be “a life of connection” and that once his parents are gone, James will “be somewhere he feels like he belongs, where he feels safe.”

“A full and meaningful and connected life,” Colin added. “That would be the dream."

Going back to the beginning, Colin also opened up about what James was like as a baby in the People profile. The star said he initially thought he was lucky to have a newborn who never cried, but he and Kim grew concerned when James didn’t hit any milestones, such as sitting up.

At 18 months old, James was misdiagnosed with cerebral palsy, which shares many of the same characteristics as Angelman syndrome. But one year later, another doctor picked up on James’s “inappropriate outbreaks of laughter” and arm movements, and he was diagnosed with Angelman syndrome following further tests.

Colin, who is renowned for his party boy past , revealed that his son’s additional needs are what motivated him to get sober as he realized that he wouldn’t be able to be a good parent unless he were clean.

https://img.particlenews.com/image.php?url=3i5Ypp_0uraiNDd00 — “James was about 2 when I got clean, when I got sober, and he was a big, big part of me putting the bottle down, a big part of it,” he told People. “Because I was in no condition to be a friend, never mind the father of a child with such exacting needs.”
“If it wasn't for my sobriety, I wouldn't be able to be there for James and enjoy in the marvels of his life and support him in the way that I feel that I can,” he added.
Kevin Winter / Getty Images

Colin also explained that parents of children with Angelman syndrome are usually warned that their child is unlikely to ever walk, and he broke down in tears when he recalled the “overwhelmingly beautiful” moment when James took his first steps toward him two weeks before his 4th birthday.

https://img.particlenews.com/image.php?url=3k7VJp_0uraiNDd00 — "I’ll never forget just the face of determination on him as he walked toward me. He took, like, six steps, and I burst into tears,” he added. "I’m proud of him every day because I just think he’s magic."
James, who is nonverbal, also suffered seizures growing up, but hasn’t had one in around a decade. As an adult, Colin explained that James is able to complete everyday tasks, but they tend to take him a while.
“It’ll take James 90 seconds to take a T-shirt off,” he said. “But he takes a T-shirt off; you sit it out with him.”
“If anything, he also gifts me with the ability to look at the human being and the human body and life as a marvel, because I see how much he struggles with things that I’d never have given a second thought to, that many of us take for granted,” Colin proudly added.
Day to day, Colin and James enjoy regular father-son activities together, such as hanging out, playing ball, swimming, watching movies, and going out for a cheeseburger.
James has also had the same carer for 18 years, with Colin explaining: "I've had live-in care so I can move freely and work, and it's been great for James as it gives him that autonomy. He has a good life. He's a happy young man.”
People / Via youtube.com

But Colin still fears what the future holds for his son, admitting that even as a wealthy Hollywood actor, he still struggles to find the help James needs.

https://img.particlenews.com/image.php?url=05DaAX_0uraiNDd00 — “My fear would be, God forbid, if and when something happens to James’s mother or me, James would be 30 or 40, and then he’d have to go in somewhere,” Colin said. “Into some kind of institute or some kind of residential care at 30 or 40, and there’d be nobody there to call over and take him out and have lunch and all that.”
Colin set up his foundation “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.”
In addition to supporting the children, Colin also wants to help out the parents as he reflected on how “all-encompassing” caring for a child with additional needs is.
“If you do something nice for yourself,” Colin began. “You feel like you’re being irresponsible; you feel like you’re neglecting your child more than if you had a typical child.”
“That’s just the way it goes because your child’s needs are so pronounced, and because you feel a sense of guilt, as well — it’s very complicated — that you brought your child into the world, that somehow it’s your fault, whatever the particular condition may be,” he added.
“I want the world to be kind to James,” Colin concluded. “I want the world to treat him with kindness and respect.”
Gilbert Flores / Variety via Getty Images

Needless to say, Colin’s decision to speak out has struck a chord with other parents of children with disabilities, and the star has been widely praised for using his platform to try and help others.

https://img.particlenews.com/image.php?url=0mIiql_0uraiNDd00 — "As a parent of a child with severe complex needs (palliative care) this had me in tears. It’s so rare to see families like mine represented like this. I hope everything he wants to do comes to fruition,” one person wrote on a Reddit forum.
“I love this. My almost 16-year-old daughter is on the more severe end of the autism spectrum. It’s terrifying to think about what her adult life will be like. She’s going to need me at all times for the rest of my life,” somebody else added. “We definitely need more resources for disabled adults.”
“My baby son has a rare genetic disorder that impacts his whole life, and damn.. the way I cried watching this. It feels like a relief in a way anytime I see special needs talked about in a real way,” one more wrote.
“All three of my kids are autistic but my oldest son also has severe cognitive delays. He will always require significant care,” another comment reads. “This foundation is so important and I'm so thankful that Colin Farrell is doing this work! What a good egg.”
“Thank you Colin for advocating for those who are underserved and those absolute miracle worker parents who sacrifice everything to care for their special needs children,” somebody else said. “We need to continue to support these kids into adulthood with continued programs that don’t have an age limit.”
While another user wrote: “This is a much better use of celebrity clout than yet another other beauty line.”
One more echoed: “Can I just say - of course his love for his son is wonderful, but how cool is it that he looked around and went, ‘well just because I have the resources to handle this does not mean everyone does. In fact, likely most people do not. And since it’s within my power to do something, I believe I will.’”
Dominik Bindl / WireImage

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