What is Angelman syndrome? Colin Farrell sets up foundation in honour of son

Colin Farrell has launched the Colin Farrell Foundation to support children with special needs and their families (Matt Crossick/PA)

Actor Colin Farrell has launched a foundation in honour of his son James who has Angelman syndrome, saying he wants the world to “treat him with kindness and respect”.

Named the Colin Farrell Foundation, the charity will aim to support adult children with intellectual disabilities such as his son’s, with advocacy, education and innovative programmes.

Angelman syndrome is a rare neurogenetic disorder, which can cause problems with development, speech and movement.

Colin Farrell said he had wanted to launch the charity ‘for years’ (Isabel Infantes/PA)

Speaking to People magazine, Farrell, 48, said he had created the foundation as he “can’t ask James if he wants to do it” because of the effects of his condition.

He told People: “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.

“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.

“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.”

He said he wanted the world to “be kind” to James when he turns 21 in September, when he will become too old for a number of support systems provided for him.

Farrell added: “I want the world to treat him with kindness and respect.

“Once your child turns 21, they’re kind of on their own.

“All the safeguards that are put in place, special ed (education) 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.”

He said he had wanted to do something for children with special needs and their families “for years”.

The actor said James and those like him had “earned the right to have a greater degree of individuality and autonomy on life, and a greater degree of community”.

He said: “If James knew getting his photograph in the back garden with me, which is not my favourite 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.

“So that’s why we’re doing it. This is all because of James — it’s all in his honour.”

I’m proud of him every day, because I just think he’s magic

The actor added that his son had worked “so hard” all his life.

He added: “Repetition, repetition, balance, his jerky gait. When he started feeding himself for the first time, his face looked 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.”

Farrell made his breakthrough in 2002’s Minority Report, and has gone on to star in 2008’s In Bruges, 2022’s The Batman and The Banshees of Inisherin, which was also released in 2022.

What is Angelman syndrome?

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

Children with the syndrome have their development delayed when they are between six and 12 months old, which leads to them being unable to sit up unsupported, and they sometimes make babbling noises.

Later they may not be able to speak at all, or will only be able to say a few words.

Most children with Angelman syndrome are able to communicate via gestures, signs or other methods.

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

The condition also affects movement, and can make walking difficult because of issues with balance and co-ordination.

Other physical signs include trembling arms or jerky movements, and legs may also be stiff.

Angelman syndrome can also cause children to laugh frequently with little reason, become easily excitable and restless, and can also give them a fascination with water.

They can also have a short attention span, struggle to sleep and need less sleep than those without the syndrome.

Although some causes of Angelman syndrome are not known, the most common cause is when the gene known as UBE3A is either missing or not working properly.

A gene is a single unit of genetic material (DNA) that acts as an instruction for the way an individual is made and develops.

The NHS says that usually a child gets two copies of the UBE3A gene, one from each parent, but only the gene from the mother is active.

In most cases of Angelman syndrome, it says, the child does not get a copy of the UBE3A gene from its mother, or the gene is not working. This means there is no active copy of the gene in the child’s brain.

In most cases of Angelman syndrome, the child’s parents do not have the condition.