Angelman Syndrome Explained: The Rare Condition Affecting Colin Farrell’s Son

Colin Farrell, renowned actor and father, has announced the launch of a new foundation aimed at supporting people with intellectual disabilities. This initiative, the Colin Farrell Foundation, is driven by Farrell’s personal experience with his son, James, who has Angelman syndrome.

In an interview with People magazine, Farrell, 48, shared his motivation for this initiative. "I want the world to be kind to James," he said. "I want the world to treat him with kindness and respect."

Farrell highlighted that many support systems for children with intellectual disabilities end when they turn 21. "I obviously have a certain amount of means… and we still struggle with finding the kind of support that James deserves and should rightfully have," he added. With James now 20, Farrell felt it was time to take action.

The Colin Farrell Foundation aims to increase Medicaid funding, improve housing options, and raise wages for caretakers. Farrell hopes these efforts will provide the support that individuals with intellectual disabilities need and deserve.

What Is Angelman Syndrome?

Angelman syndrome is a rare neurological condition affecting brain development. It causes severe physical and learning disabilities. The condition is caused by changes to a gene responsible for brain function. There is no cure, but therapies can help manage symptoms like seizures and gastrointestinal issues. It affects about one in 15,000 births, or 500,000 people worldwide, according to the Angelman Syndrome Foundation in Aurora, Illinois. Life expectancy for those affected is normal.

Named after British doctor Harry Angelman, who first identified it in 1965, Angelman syndrome comes with various symptoms. These include developmental delays, severe speech impairment, balance problems, seizures, and issues with the gastrointestinal system, bones, and eyes. Some people with the condition may show unique behaviors, like hand flapping or holding their arms up while walking.

Farrell recalled his son’s early signs, saying, "James was a very silent baby… he didn’t make any sounds at all. I thought I’d hit the lottery, you know, I thought I have a chill child who’s not going to keep me up at night." However, as James did not meet developmental milestones, Farrell and his family realized something was wrong.

James took his first steps just before his fourth birthday. Farrell described the moment as “profound,” with tears in his eyes. Other signs of Angelman syndrome can include frequent laughter without cause, a tendency to stick the tongue out, and lighter skin, hair, and eyes compared to other family members.

What Causes Angelman Syndrome?

Angelman syndrome usually results from changes to the UBE3A gene. Normally, a child inherits two copies of this gene, one from each parent. The syndrome occurs when the maternal copy of the UBE3A gene is missing or damaged. In rare cases, it can also result from having two paternal copies of the gene. Researchers often cannot pinpoint the exact cause of these genetic changes, though a family history of the condition may increase the risk.

Farrell’s new foundation will work to improve the lives of those affected by Angelman syndrome and other intellectual disabilities, aiming to offer them the support and respect they deserve.