Irish actor Colin Farrel, known for roles in films like The Banshees of Inisherin and In Bruges, has recently opened up about the struggles of finding long-term care for his son James, who lives with Angelman syndrome, a rare genetic disorder.
The actor spoke about his son's diagnosis last year. His son James, 21, was diagnosed with the rare disease at the age of 4. He spoke about why he and his ex and his child's mother Kim Bordenave, want to get their child to a care facility.
“It's tricky, some parents will say: 'I want to take care of my child myself.' And I respect that," Farrell told Candis Magazine. He added, "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.”
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Farrell added that as parents, he and his ex wants to find a facility where their son can be, and could have 'a full and happy life, where he feels connected'. "He needs a bigger life than we can afford him, by having a sense of community that he feels connected to, by going out in the van every day and going to the supermarket and doing the shopping together, by going to the beach, museums, movies, all that stuff. Just a connected life," he added.
Farrell’s personal account sheds light on to struggles of people living with Angelman syndrome and those connected with them. Let’s take a look at the rare disorder.
What is Angelman syndrome?
Angelman syndrome (AS) is a rare neuro-genetic disorder, caused by a deletion or mutation in the UBE3A gene on chromosome 15, inherited from the mother. This condition occurs in one in 15,000 live births or 500,000 people worldwide. It is named after British pediatrician Dr. Harry Angelman, who noted its characteristic features in a group of children in 1965.
According to NHS, people with the condition will have a near-normal life expectancy but might require support throughout their life.
According to the Angelman Syndrome Foundation, the symptoms can vary and range from mild signs to severe. Children diagnosed with the condition may show the following signs:
The actor spoke about his son's diagnosis last year. His son James, 21, was diagnosed with the rare disease at the age of 4. He spoke about why he and his ex and his child's mother Kim Bordenave, want to get their child to a care facility.
“It's tricky, some parents will say: 'I want to take care of my child myself.' And I respect that," Farrell told Candis Magazine. He added, "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.”
Video
Farrell added that as parents, he and his ex wants to find a facility where their son can be, and could have 'a full and happy life, where he feels connected'. "He needs a bigger life than we can afford him, by having a sense of community that he feels connected to, by going out in the van every day and going to the supermarket and doing the shopping together, by going to the beach, museums, movies, all that stuff. Just a connected life," he added.
Farrell’s personal account sheds light on to struggles of people living with Angelman syndrome and those connected with them. Let’s take a look at the rare disorder.
What is Angelman syndrome?
Angelman syndrome (AS) is a rare neuro-genetic disorder, caused by a deletion or mutation in the UBE3A gene on chromosome 15, inherited from the mother. This condition occurs in one in 15,000 live births or 500,000 people worldwide. It is named after British pediatrician Dr. Harry Angelman, who noted its characteristic features in a group of children in 1965.
According to NHS, people with the condition will have a near-normal life expectancy but might require support throughout their life.
According to the Angelman Syndrome Foundation, the symptoms can vary and range from mild signs to severe. Children diagnosed with the condition may show the following signs:
- Developmental delays: Infants may show an inability to support one's head, or pull oneself up to stand. Delayed motor skills
- Seizures occur between 18 months to 3 years.
- Happy demeanor
- Sleep problems
- Lack of speech
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