The actor previously detailed how medical professionals tragically misdiagnosed his 21-year-old son James as having cerebral palsy before determining that he actually had Angelman syndrome.A rare genetic illness that mostly affects the neurological system, Angelman syndrome results in severe intellectual and physical disabilities.
Colin, 48, disclosed in an interview with Candis Magazine that he and his former partner, Kim Bordenave, have decided to place James in a long-term care facility.Source: Wikimedia Commons
He said: “It’s tricky,” some parents will say: “I want to take care of my child myself.” And I respect that.
“But my horror would be… What if I have a heart attack tomorrow, and, God forbid, James’ mother, Kim, has a car crash and she’s taken too – and then James is on his own?”
“Then he’s a ward of the state and he goes where? We’d have no say in it.”He and Kim are hoping to “find somewhere we like where he can go now, while we’re still alive and healthy, that we can go and visit, and we can take him out sometimes.”
Colin continued, “We want him to find somewhere where he can have a full and happy life, where he feels connected.”
When James missed developmental milestones and had trouble sitting up or crawling as a newborn, the Phone Booth actor previously talked about his first-born son’s ailment and revealed that he sought medical guidance.Colin explained that because the symptoms of both disorders are identical, many people with the rare illness receive a mistaken diagnosis of cerebral palsy.
He told People, “[James] couldn’t sit up. He wasn’t crawling. I think he was a year and a half when we took him to get really checked out, and he was diagnosed as having cerebral palsy.”
Cerebral palsy is the collective term for a group of disorders affecting movement and coordination that occur before, during, or shortly after birth.In addition to learning challenges, other symptoms may include trouble speaking, swallowing, or seeing.
Colin said, “It was a common misdiagnosis, because it shared a lot of the same characteristics. And that was a downer for sure.”
The Oscar contender disclosed that a pediatric physician recommended that James be evaluated for Angelman syndrome when he was just around two and a half years old.
Recalling the moment he received the diagnosis, he shared, “I remember the first two questions I asked were, What’s the life expectancy and how much pain is involved?”
And the doctor said, “Life expectancy, as far as we can tell, is the same for you and for me, and pain, no.”
A physician conducted a test for Angelman syndrome after observing an unusual symptom.
Colin explained, “One of the characteristics of Angelman syndrome is outbreaks of laughter. And the doctor saw that James was laughing a lot and doing this movement [he waves his hands],’ the father-of-two shared.”
Seizures are another characteristic of Angelman syndrome, which Colin, who also has a 15-year-old son named Henry Tadeusz with 41-year-old Polish actress Alicja Bachleda-Curus, described as “one of the things that parents struggle with greatly.”
He added, “Thankfully, James hasn’t had a breakthrough seizure now in about 10 or 11 years, but I’ve been in the back of ambulances, I’ve been in the hospital with him.”
“I’ve done Diastat [a sedative] up his rectum to get him out of a seizure that lasted longer than three minutes. Finding the right amount of medication that doesn’t have adverse effects — that’s all very tricky business.”
To support, educate, and advocate for persons with intellectual disabilities, the actor is now starting the Colin Farrell Foundation.
“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 said.
The proud dad stated that his eldest son “has worked so hard all his life, so hard.”
He said, “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.”
Colin also discussed how, shortly before his fourth birthday, he saw his son take his first steps.
Detailing the “profound” moment to People, Colin said, “I knew they [James’s carers] were working on walking. And I stood over there, and she let him go, and he just came to [me].”
“It was so profound. It was magic.”
“I’ll never forget just the face of determination on him as he walked toward me. He took, like, six steps, and I burst into tears.”
James needs the assistance of a live-in caretaker to complete his daily tasks since his illness is so severe that he is nonverbal.
Colin revealed his Angelman Syndrome to the world when James was four years old, claiming that his kid had shown “amazing courage” despite his illness.
James still required assistance with dressing and cooking, so Colin and Kim applied for conservatorship of him shortly before his 18th birthday.
Later on, he disclosed that he and James’s mother make sure to celebrate his milestones at any age, including James’s first words at age six, his ability to feed himself at age 19, and the control of his seizures.
Although Colin told InStyle that he initially made the decision to “talk publicly about the pride and joy I had in our son” when attending the 2007 Special Olympics, he has kept a fairly private existence and has not discussed his son in great depth until recently.
He said, “He has enriched my life, but I don’t want to minimize the trials that so many families go through; the fear, consternation, frustration, and pain… When you’re the parent of a child with special needs, it’s important to feel that you’re not alone.”
Speaking about having a disabled child, the Hollywood celebrity claimed that James was the primary factor in his ability to stay sober.
Kim, the mother of James and Colin, dated between 2001 and 2003. Later, he had Henry with Alicja, his co-star from Ondine, whom he dated from late 2008 until early 2010.
