James, who has Angelman syndrome, is being placed in a care home for the heartbreaking reason he and his ex-wife Kim Bordenave have chosen to do so.
Irish actor Colin Farrell has emotionally explained his decision to place his 21-year-old son in long-term care. Originally, his son James was mistakenly diagnosed with cerebral palsy, but it later turned out he has Angelman syndrome, which is a rare genetic disorder known to severely impact the nervous system and cause significant learning disabilities.
Oscar-nominated actor Colin, together with his former partner Kim Bordenave, came to the agreement to ensure James, who is nonverbal, would receive the best care possible. Colin, 48, opened up about their decision, expressing concerns over what would happen to James if both parents were no longer around.
Some parents will say, “I want to take care of my child myself,” and Colin concurred that it’s difficult. What’s my fear, though, would be if I had a heart attack tomorrow and Kim, James’ mother, Kim, was also involved in a car accident, and James was then on his own?
The Batman’s star explained the need for a care solution in a heartfelt interview with Candis Magazine: “Then he’s a ward of the state and he goes where. We wouldn’t be able to participate in it.
Angelman syndrome: what is it?
Angelman syndrome is a rare genetic condition that affects the nervous system and can trigger serious physical and learning difficulties. The NHS notes that individuals with Angelman syndrome typically have a nearly normal life expectancy, yet they require lifelong support.
Around 6 to 12 months old, a child with Angelman syndrome will start to show signs of delayed development, including unable to sit up unsupported or make babbling noises, according to the NHS website.
They may not be able to speak at all or may only be able to say a few words later. Most children with Angelman syndrome will be able to communicate through gestures, signs, or other means of communication, though.
The child’s parents don’t typically have Angelman syndrome, and the genetic difference that causes the syndrome is by accident, around the time of conception, according to the NHS.
According to the NHS website, “Angelman syndrome typically occurs when the gene known as UBE3A is either missing or not functioning properly.” A single piece of genetic material (DNA) serves as a blueprint for the creation and development of an individual. A child typically receives two copies of this gene, one for each parent, but only the mother’s gene is active.
What has Colin Farrell said about Colin’s battles with his health?
Kim and Colin’s mother are actively looking for a place to stay active in their son’s life so they can continue to spend quality time with him while they are still in good health.
The Batman actor has previously revealed the emotional journey his son’s misdiagnosis caused him to experience. He has revealed that his son had a rare condition. We want him to find a place where he feels most connected and able to live a full and content life, according to Colin in PEOPLE Magazine.
Colin discussed the effects of James’ initial incorrect diagnosis last summer, pointing out that the syndrome is frequently confused with cerebral palsy because of similar symptoms. He described the challenging early years, stating, “James couldn’t sit up. He wasn’t stumbling. When we took him to have his cerebral palsy, I believe he was a year and a half old, we were given the diagnosis.
The actor from Banshees of Inisherin continued to refer to the misdiagnosis as a “common mistake, sharing:” It was a common misdiagnosis because it shared many of the same traits. And undoubtedly that was a downer.
A paediatric neurologist only recommended testing for Angelman syndrome when James was two and a half years old, which gave rise to the accurate diagnosis. Then, Colin revealed the two crucial inquiries he made to doctors: “I remember the first two being “What’s the life expectancy and how much pain is involved?” “Life expectancy, as far as we can tell, is the same for you and for me, and pain, no,” the doctor said, “and the reassuring response he received.
The Colin Farrell Foundation was established to assist adult children with intellectual disabilities last year. He made a stark point at the launch by stating that once his son James turned 21, he would be “kind of on his own” as protections for younger disabled people disappear. He explained that while the idea for the foundation had been in the works for years, it finally came to an end.
Colin made an open admission about his decision to discuss James’ condition in public, revealing that he had discussed the subject with James’ mother after the Special Olympics in Shanghai in 2007 and that he wanted to express his pride and happiness to their son in person.
He has made my life better, but I don’t want to minimize the difficulties that so many families face, such as fear, consternation, frustration, and suffering… It’s important to feel as though you’re not the only one raising a child with special needs.
He stated in an interview with InStyle in 2012 that “we share in the smallest victories, the first words at the age of six or seven, being able to feed oneself at the age of 19 and managing the seizures.” I nearly split up when James took his first steps when he was four years old! “.
In order to manage James’ personal needs and medical decisions, Colin and his ex Kim had previously filed for conservatorship of him in 2021.
They requested that the court grant them the power to influence his social and sexual relationships and make decisions about his education. He may ask whether he can marry, access private records, and grant or decline medical approval.
Source: Mirror
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