Colin Farrell has opened up on the heartbreaking decision to put his 21-year-old son into a long-term care facility. The actor previously shared how his son James had been misdiagnosed with cerebral palsy.
He revealed the heartbreaking medical error before doctors eventually confirmed James has Angelman syndrome. According to the NHS, it is a rare genetic condition that affects the nervous system and causes severe physical and learning disabilities.
They say a person with Angelman syndrome will have a near-normal life expectancy, but they will need support throughout their life. Colin, 48, and his ex Kim Bordenave have made the tough decision to settle James, who is non verbal, into a care facility.
Opening up on the decision, the Golden Globe winner shared his fears for the future if they didn’t put support in place for James. “It’s tricky, some parents will say ‘I want to take care of my child myself’ and I respect that,” Colin said.
“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?”
Speaking to Candis Magazine the Batman star added: “Then he’s a ward of the state and he goes where? We’d have no say in it.” Colin and Kim are looking to find somewhere for James he can go “now while we’re still alive and healthy” so they can visit him and also take him out.
He shared: “We want him to find somewhere where he can have a full and happy life, where he feels connected.” Last summer, Colin opened up on the impact of James’ misdiagnosis.
Colin said the syndrome is often misdiagnosed with cerebral palsy due to both conditions having similar symptoms. Speaking candidly to PEOPLE Magazine, the Phone Booth star said: “[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 name for a group of lifelong conditions that affect movement and co-ordination. It’s caused by a problem with the brain that develops before, during or soon after birth, according to the NHS website.
Colin continued: “It was a common misdiagnosis, because it shared a lot of the same characteristics. And that was a downer for sure.”
It wasn’t until James was around two and a half that he was correctly diagnosed after a paediatric neurologist advised he was tested for Angelman syndrome. After the correct diagnosis was confirmed, Colin confessed he had two important questions he had to ask doctors.
“I remember the first two questions I asked were, “What’s the life expectancy and how much pain is involved?,” Colin said. “And the doctor said, ‘Life expectancy, as far as we can tell, is the same for you and for me, and pain, no.'”
Last year, the actor launched the Colin Farrell Foundation to provide support for adult children with intellectual disability. Speaking at the time, he said that once James turned 21 he would be “kind of on his own” as all the safeguards that are provided to younger people with disabilities are taken away.
He explained the foundation had been part of his thoughts for a number of years, but it was the right time to make the step to launch it.
Colin and then-girlfriend Kim welcomed James in 2003, but the pair had a rocky relationship before he was even born but have managed to put their differences aside for him.
Discussing the decision to go public about James’ condition, Colin shared: “It was at the Special Olympics in Shanghai in 2007 that I decided, after consulting with James’ mother, that I wanted to talk publicly about the pride and joy I had in our son.
“He has enriched my life, but I don’t want to minimise 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.”
He told InStyle in 2012: “We share in the smallest victories; the first words at age six or seven, being able to feed oneself at 19, and getting the seizures under control. When James took his first steps at age four, I nearly broke in half!”
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