Friday, November 22, 2024

Colin Farrell shares rare glimpse of life with son James, 20, who has genetic disorder Angelman syndrome: ‘I want the world to be kind to him’

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Collin Farrell has offered a rare glimpse into his life looking after his son James, 20, who has special needs due to Angelman syndrome.

James was born with the neurogenetic disorder, which causes developmental delays, impaired balance and other issues.

His own case is severe enough that he is nonverbal and requires the help of a live-in caregiver to accomplish his day-to-day tasks.

Now, as Colin launches a foundation for other adults with intellectual disabilities, he has spoken touchingly about his love for his son.

‘I want the world to be kind to James. I want the world to treat him with kindness and respect,’ the 48-year-old actor told People.

Collin Farrell has offered a rare glimpse into his life looking after his son James, 20, who has Angelman syndrome; he showed this picture on The Ellen DeGeneres Show in 2010 

James is pictured in an Instagram image his mother Kim Bordenave posted in February in honour of Angelman Syndrome Awareness Day

James is pictured in an Instagram image his mother Kim Bordenave posted in February in honour of Angelman Syndrome Awareness Day

Colin shares James with his ex, Canadian model Kim Bordenave, and has another son called Henry, 14, with Alicja Bachleda-Curús, his co-star in the 2009 film Ondine. 

During Colin’s photoshoot for People magazine, James can seen playing with a ball in the backyard and sweetly trying to integrate a reporter into the activity by tossing it to her.

Colin shared that James ‘has worked so hard all his life, so hard’ at learning ‘repetition’ and ‘balance’, and improving his ‘jerky gait’.

He recalled: ‘When he started feeding himself for the first time, his face looks like a Jackson Pollock by the end of it. But he gets it in, he feeds himself beautifully. I’m proud of him every day, because I just think he’s magic.’ 

‘This is the first time I’ve spoken about it and, obviously, the only reason I’m speaking is I can’t ask James if he wants to do this,’ said Colin. 

Part of the reason he started the Colin Farrell Foundation is that when people with special needs turn 21, they become ineligible for certain aid that was previously available to them.

‘Once your child turns 21, they’re kind of on their own,’ said Colin, less than two months before James reaches that milestone age.

‘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.’

Colin share James with his ex, Canadian model Kim Bordenave (pictured together), and has another son called Henry, 14, with his Ondine co-star Alicja Bachleda-Curús

Colin share James with his ex, Canadian model Kim Bordenave (pictured together), and has another son called Henry, 14, with his Ondine co-star Alicja Bachleda-Curús

Kim affectionately posted this picture of James on Mother's Day 2023, writing: 'I adore this guy x happy mothers day to all the mama¿s out there x lots of love'

Kim affectionately posted this picture of James on Mother’s Day 2023, writing: ‘I adore this guy x happy mothers day to all the mama’s out there x lots of love’

Kim posted this picture of James on Angelman Syndrome Awareness Day 2023, explaining: 'It¿s his physical limitations that are the hardest for us, for him'

Kim posted this picture of James on Angelman Syndrome Awareness Day 2023, explaining: ‘It’s his physical limitations that are the hardest for us, for him’

Colin is pictured with his younger son Henry at last year's Oscars, where he was nominated for best lead actor in Martin McDonagh's The Banshees Of Inisherin

Colin is pictured with his younger son Henry at last year’s Oscars, where he was nominated for best lead actor in Martin McDonagh’s The Banshees Of Inisherin

What is Angelman syndrome? 

Angelman syndrome is a genetic condition that affects the nervous system and causes severe physical and learning disabilities.

A person with Angelman syndrome will have a near-normal life expectancy, but they will need support throughout their life.

Characteristics of Angelman syndrome

A child with Angelman syndrome will begin to show signs of delayed development at around six to 12 months of age, such as being unable to sit unsupported or make babbling noises.

Later, they may not speak at all, or may only be able to say a few words. However, most children with Angelman syndrome will be able to communicate using gestures, signs or other systems.

The movement of a child with Angelman syndrome will also be affected. They may have difficulty walking because of issues with balance and co-ordination (ataxia). Their arms may tremble or make jerky movements, and their legs may be stiff.

Several distinctive behaviours are associated with Angelman syndrome. These include: 

* frequent laughter and smiling, often with little stimulus

* being easily excitable, often flapping the hands

* being restless (hyperactive)

* having a short attention span

* trouble sleeping and needing less sleep than other children

* a particular fascination with water

 

He explained: ‘This is the first time I’ve spoken about it, and obviously the only reason I’m speaking is I can’t ask James if he wants to do this.’ 

Colin then clarified: ‘I mean, I can. I speak to James as if he’s 20 and has perfect fluency with the English language and age-appropriate cognitive ability.’

He added: ‘But I can’t discern a particular answer from him as to whether he’s comfortable with all this or not, so I have to make a call based on knowing James’s spirit and what kind of young man he is and the goodness that he has in his heart.’ 

The In Bruges actor hopes ‘that if James knew getting his photograph in the back garden with me, which is not my favorite thing to do, if us doing this could help families and other young adults who live with special needs, he would say: “Dad, what are you talking about? Why are you even asking me? It’s a no-brainer.”‘

He noted that ‘that’s why’ he agreed to open up his life to the spotlight and start his foundation. ‘This is all because of James – it’s all in his honor.’

The goal of the Colin Farrell Foundation is to help provide ‘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’. 

Intellectually disabled adults have ‘earned the right to have a greater degree of individuality and autonomy on life, and a greater degree of community,’ he said.

When James was four, Colin went public with his Angelman Syndrome, saying his son had demonstrated ‘amazing courage’ in the face of his condition.

Shortly before James turned 18, Colin and Kim filed to obtain a conservatorship of him; they are pictured at the 2003 Oscars, six months before he was born

Shortly before James turned 18, Colin and Kim filed to obtain a conservatorship of him; they are pictured at the 2003 Oscars, six months before he was born 

‘He took his first steps about six weeks ago, and it was four years in the making. It was incredibly emotional. There wasn’t a dry eye in the house,’ said Colin. 

‘The only time I’m reminded that there is something different about him – that he has some deviation of what is perceived to be normal – is when I see him with other four-year-olds. Then I go: “Oh yeah,” and it comes back to me. But from day one I felt that he’s the way he’s meant to be,’ he told the Irish Independent. 

Shortly before James turned 18, Colin and Kim filed to obtain a conservatorship of him, noting he still needed help with tasks like getting dressed and making meals.

In 2012, Colin remarked that he and Kim ‘share in the smallest victories; the first words at age six or seven, being able to feed oneself at 19, and getting the seizures under control. When James took his first steps at age four, I nearly broke in half!’

Colin first decided ‘talk publicly about the pride and joy I had in our son’ while attending the 2007 Special Olympics, he told InStyle.

‘He has enriched my life, but I don’t want to minimize the trials that so many families go through; the fear, consternation, frustration, and pain…. When you’re the parent of a child with special needs, it’s important to feel that you’re not alone.’ 

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