What is Angelman syndrome? Colin Farrell opens up about 20-year-old son
FILE - Colin Farrell attends the Photo Call for Apple TV+s "Sugar" at Four Seasons Hotel Los Angeles at Beverly Hills on March 12, 2024 in Los Angeles, California. (Photo by Axelle/Bauer-Griffin/FilmMagic)
Colin Farrell is opening up about life with his 20-year-old son who has Angelman syndrome.
The Irish actor is sharing details of James’ life as they prepare for his 21st birthday, a milestone when many government safeguards for people with special needs are cut off.
Farrell is launching a new foundation in James’ honor with the goal of helping families across the country who are struggling with similar care issues for their adult children who have special needs.
Here is what to know about Angelman syndrome and Farrell’s new foundation:
What is Angelman syndrome?
Angelman syndrome (AS) is a rare neuro-genetic disorder that causes developmental delays.
It is caused by a missing or defective UBE3A gene in the 15th chromosome derived from the mother, according to the Angelman syndrome foundation.
The foundation says the disorder occurs in one in 15,000 births, or about 500,000 people worldwide.
Angelman syndrome causes delayed development that becomes noticeable around 6 - 12 months. People with AS also can have problems with speech and balance, mental disability, and, sometimes, seizures.
Angelman syndrome vs. autism
Angelman syndrome shares symptoms and characteristics with other disorders including autism, according to the Angelman syndrome foundation.
Similar traits include developmental delays, verbal issues and repetitive movements.
Hallmarks unique to AS include frequent smiles and outbreaks of laughter.
AS is also a confirmed genetic disorder, while there are many causes of autism.
Colin Farrell son
Actor Colin Farrell shared this month with People Magazine details of his life with 20-year-old son, James, who has Angelman syndrome.
Farrell remembers James as a baby barely making any sounds, and thinking he was just a "chill, chill" baby. But when James wasn’t hitting certain benchmarks, they suspected something was wrong.
James was initially diagnosed with cerebral palsy, which Farrell said is a common AS misdiagnosis. A year later, around 3 years old, James got the correct diagnosis.
Farrell said James is an incredibly hard worker and is very determined. James walked just shy of his fourth birthday and is able to complete certain tasks like taking off a T-shirt.
"He 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 would’ve never given a second thought to; I would just, like many of us, take for granted," Farrell shared with People.
Farrell also credited James with being a big part in his sobriety.
Farrell has a second son, 14-year-old Henry, whom he shares with "Ondine" costar Alicja Bachleda-Curús.
James’ mother is Farrell’s ex-girlfriend Kim Bordenave.
Colin Farrell Foundation
In 2024, Farrell launched the Colin Farrell Foundation in honor of James.
The nonprofit provides support for families of adult children who have intellectual disabilities through education, advocacy and innovative programs.
"There are support systems in place across the country and it varies state to state, but once your child turns 21 they’re kind of on their own. All the safeguards that are put in place, all the inclusive programs, special ed classes, that all kind of goes away when your child is 21," Farrell told People. "And so you’re left with a young adult who should be an integrated part of our modern society here and very much, more often than not, is left behind."
Farrell said working with the foundation will help set in place what the next chapter of James’ life will look like, which is something other families struggle to figure out as well.
The foundation will focus on the lack of affordable and accessible community-based housing and day programs for people living with intellectual disability who require more than minimal daily living support.
Its goal is to create both small group homes, and large-scale communities, with access to meaningful and enriching day programs, across the country.
This story was reported from Detroit.