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: âItâs tricky,â some parents will say: âI want to take care of my child myself.â And I respect that.
âBut my horror would be⌠What if I have a heart attack tomorrow, and, God forbid, Jamesâ mother, Kim, has a car crash and sheâs taken too â and then James is on his own?â
âThen heâs a ward of the state and he goes where? Weâd have no say in it.âHe and Kim are hoping to âfind somewhere we like where he can go now, while weâre still alive and healthy, that we can go and visit, and we can take him out sometimes.â
Colin continued, âWe want him to find somewhere where he can have a full and happy life, where he feels connected.â
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 sonâs 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, â[James] couldnât sit up. He wasnât 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.â
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, âIt was a common misdiagnosis, because it shared a lot of the same characteristics. And that was a downer for sure.â
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, âI remember the first two questions I asked were, Whatâs the life expectancy and how much pain is involved?â
And the doctor said, âLife expectancy, as far as we can tell, is the same for you and for me, and pain, no.â
A physician conducted a test for Angelman syndrome after observing an unusual symptom.
Colin explained, âOne 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],â the father-of-two shared.â
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 âone of the things that parents struggle with greatly.â
He added, âThankfully, James hasnât had a breakthrough seizure now in about 10 or 11 years, but Iâve been in the back of ambulances, Iâve been in the hospital with him.â
âIâve 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 doesnât have adverse effects â thatâs all very tricky business.â
To support, educate, and advocate for persons with intellectual disabilities, the actor is now starting the Colin Farrell Foundation.
âThis is the first time Iâve spoken about it, and obviously the only reason Iâm speaking is I canât ask James if he wants to do this,â he said.
The proud dad stated that his eldest son âhas worked so hard all his life, so hard.â
He said, âRepetition, 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. Iâm proud of him every day, because I just think heâs magic.â
Colin also discussed how, shortly before his fourth birthday, he saw his son take his first steps.
Detailing the âprofoundâ moment to People, Colin said, âI knew they [Jamesâs carers] were working on walking. And I stood over there, and she let him go, and he just came to [me].â
âIt was so profound. It was magic.â
âIâll never forget just the face of determination on him as he walked toward me. He took, like, six steps, and I burst into tears.â
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 âamazing courageâ 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 Jamesâs mother make sure to celebrate his milestones at any age, including Jamesâs 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 âtalk publicly about the pride and joy I had in our sonâ 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, âHe has enriched my life, but I donât want to minimize the trials that so many families go through; the fear, consternation, frustration, and pain⌠When youâre the parent of a child with special needs, itâs important to feel that youâre not alone.â
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.