What Is Angelman Syndrome? Everything to Know About the Rare Genetic Disorder Colin Farrell’s Son James Has

For the first time, Colin Farrell has opened up his home and talked in detail about life with his son James, who has Angelman syndrome.

James was just a child when he was diagnosed with a rare neurogenetic disorder. Now in his 20s, his family is still struggling to find the support he “deserves and rightfully should have,” Farrell, 48, tells PEOPLE in this week’s issue.

“I want the world to be good to James. I want the world to treat him with kindness and respect,” says the actor, which prompted him to raise awareness about Angelman syndrome.

“I’m very withdrawn,” Farrell tells PEOPLE, calling his home a safe place. “But I chose to believe that James would say, ‘Dad, what are you talking about? Why are you even asking me? That’s nonsense.’”

Colin Farrell poses exclusively for People with his son Luke at his home in Los Angeles, CA on June 7, 2024.

Cliff Watts

Angelman syndrome, which affects 1 in 15,000 people, is a rare neurogenetic disorder that results from a mutation or deletion of a gene on chromosome 15, called the ubiquitin protein ligase E3A (UBE3A) gene.

The condition can cause serious developmental delays and is usually first noticed when a baby isn’t crawling or babbling between 6 and 12 months, according to the Mayo Clinic. It also causes difficulty walking, speaking and eating, seizures, balance problems, excessive laughing, sleep problems, scoliosis and obesity due to limited mobility.

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Colin Farrell with his son James.

Courtesy of Colin Farrell

Colin Farrell launches foundation in honor of son with Angelman Syndrome as he opens up about their life (Exclusive)

Angelman syndrome shares symptoms and characteristics with other disorders such as autism, cerebral palsy, and Prader-Willi syndrome, which is why 50% of individuals are originally misdiagnosed, according to the Angelman Syndrome Foundation.

“Angelman syndrome is not easy to diagnose,” Paula Evans, executive director of the newly launched Colin Farrell Foundation, tells PEOPLE. “It doesn’t show up in any prenatal testing, and you have to really know what you’re looking for to test for it.”

Children who have the disorder are often not diagnosed until they are between 3 and 7 years old. This can be confirmed by blood testing as several genetic tests are done on the blood sample. After an official diagnosis, early intervention is key.

Although there is no cure for Angelman syndrome, treatment for the condition involves managing symptoms and addressing any developmental delays. This may include anti-seizure medications, physical and occupational therapy, speech therapy, behavioral therapy, sleep training or sleep management medications, and more.

Colin Farrell poses exclusively for People with his son Luke at his home in Los Angeles, CA on June 7, 2024.

Cliff Watts

Doing research and finding community helped Farrell learn how to best care for his son. James started walking at age 4 and has been seizure free for a decade. He also feeds himself and is able to communicate and show affection, despite being non-verbal.

“With Angelman syndrome, not every child is the same,” he says. “There is a wide spectrum of characteristics that come with the condition, but you can start to zone your child so that you can treat them as an individual under the umbrella of the wealth of information that is being gathered about the condition that they may have.”

“A rare disease by its very nature means you’re unlikely to find anyone in your own community who has any shared experience of what you’re dealing with,” Evans also notes. “So that sense of community and being able to connect and network and share tips and strategies is critical.”

Look for more of Farrell’s exclusive interview in this week’s issue of PEOPLE, on newsstands Friday.

Colin Farrell People Cover.

Cliff Watts

Life expectancy for people with Angelman syndrome is normal, but individuals with the condition will need lifelong care. However, Farrell explains that James, who turns 21 in September, will age out of many of the support systems available to families with children who have special needs.

“Once your child turns 21, they’re kind of on their own,” he says. “All the safeguards that were put in place, the special classes, all of that goes away, so you’re left with a young adult who should be an integrated part of our modern society, and is often neglected.”

This is partly why Farrell is launching the Colin Farrell Foundation to support adult children with intellectual disabilities through advocacy, education and innovative programs.

The actor “for years wanted to do something in the area of ​​providing greater opportunities for families who have a child with special needs, to get the support they deserve, actually help in all areas of life,” he says.

James, and those like him, “earned the right to a greater degree of individuality and autonomy in life, and a greater degree of community.”

For more information or to find out how you can offer support, visit www.colinfarrellfoundation.org.

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Source: HIS Education