The Colin Farrell Foundation will provide support for adult children who have an intellectual disability through advocacy, education, and innovative programs.
The Bustling Life of Colin Farrell’s Home
Colin Farrell‘s house is filled with a bustle and din that’s far from the actor’s comfort zone. As photography and video teams scurry about the hillside home in Los Angeles, Farrell, 48, is keeping tabs on his son James, 20, who has Angelman syndrome, a rare neurogenetic disorder. James, who is nonverbal, is sitting in the backyard playing catch with his live-in caregiver. He makes eye contact with a journalist standing nearby and immediately throws the miniature basketball in her direction to include her in his game.
James’ eyes light up when he spots Farrell, but it’s nothing in comparison with the noticeable swell in his dad’s chest when those around them respond so sweetly to his son. “I want the world to be kind to James,” the actor tells PEOPLE. “I want the world to treat him with kindness and respect.”
Turning Point: James Turning 21
And that, ultimately, is the driving force behind Farrell’s decision to open up his home and talk in-depth about his life with his son for the first time. Turning 21 in September, James (whom Farrell shares with an ex, model Kim Bordenave) will age out of many of the support systems provided for families with kids who have special needs.
“Once your child turns 21, they’re kind of on their own,” Farrell says. “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.”
Launching the Colin Farrell Foundation
To help bridge that gap, the actor is now launching the Colin Farrell Foundation to provide support for adult children who have intellectual disabilities through advocacy, education, and innovative programs. “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,” he says.
A Father’s Deep Connection
Cliff Watts
“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.”
James “has worked so hard all his life, so hard,” Farrell adds. “Repetition, repetition, balance, his jerky gait. 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.”
A Dream Realized: The Colin Farrell Foundation
As for the foundation, Farrell has “for years wanted to do something in the realm of providing 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,” he says.
James, and those like him, have “earned the right to have a greater degree of individuality and autonomy on life, and a greater degree of community.”
For now, the actor chooses to believe “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,’ ” Farrell adds. “So that’s why we’re doing it. This is all because of James— it’s all in his honor.”
FAQs about Angelman Syndrome
What is Angelman Syndrome?
Angelman syndrome is a rare neurogenetic disorder characterized by severe intellectual and developmental disabilities, sleep disturbances, seizures, and frequent laughter or smiling. It often includes a happy demeanor and hyperactivity.
What are the Symptoms of Angelman Syndrome?
Symptoms of Angelman syndrome include developmental delays, lack of speech, seizures, balance and movement issues, and distinctive facial features such as a wide mouth and spaced teeth.
What Causes Angelman Syndrome?
Angelman syndrome is typically caused by a deletion or mutation in the UBE3A gene on chromosome 15. It is usually not inherited and occurs as a random genetic mutation.
How is Angelman Syndrome Inherited?
Angelman syndrome is generally not inherited. It most often results from a genetic mutation that occurs randomly. In rare cases, it can be inherited from a parent if they carry a mutated gene.
How Common is Angelman Syndrome?
Angelman syndrome occurs in approximately 1 in 12,000 to 1 in 20,000 individuals.
What is the Life Expectancy for Someone with Angelman Syndrome?
Individuals with Angelman syndrome typically have a normal life expectancy, although they may face significant health challenges that require ongoing management.
What are the Treatments for Angelman Syndrome?
While there is no cure for Angelman syndrome, treatments focus on managing symptoms. These may include anti-seizure medications, physical therapy, communication therapy, and behavioral therapies.
What are the Facial Features of Angelman Syndrome?
Common facial features of Angelman syndrome include a wide mouth, widely spaced teeth, a prominent chin, and deep-set eyes.
How Does Angelman Syndrome Affect the Eyes?
Individuals with Angelman syndrome may have strabismus (crossed eyes), and many experience light pigmentation of the iris and eye tissues.
Are There Any Famous People with Angelman Syndrome?
While there are no widely known celebrities with Angelman syndrome, many individuals and families actively advocate for awareness and support.
What Support is Available for Adults with Angelman Syndrome?
The Colin Farrell Foundation and other organizations offer support for adults with Angelman syndrome through advocacy, education, and innovative programs to promote greater independence and quality of life.
What is the Angelman Syndrome Foundation?
The Angelman Syndrome Foundation is a nonprofit organization dedicated to advancing the awareness, research, and support for individuals and families affected by Angelman syndrome.
Can Babies be Diagnosed with Angelman Syndrome?
Yes, Angelman syndrome can be diagnosed in infancy or early childhood, especially if developmental delays and other symptoms are present. Early diagnosis can help manage and treat symptoms more effectively.
KaranRathod