In a well-founded case of positive celebrity influence, Colin Farrell’s personal life has opened the doors to healthy conversations around a rare condition called Angelman Syndrome (AS). The 48-year-old actor recently launched the Colin Farrell Foundation after seeking real-life inspiration from his family’s experience with intellectual disability.
The DC Penguin star opened up publicly for the first time about his 20-year-old son James’s diagnosis. Farrell shares him with his ex, model Kim Bordenave.
His son, who will turn 21 in September, will soon age out of support systems provided to families with children who have special needs.
“Once your child turns 21, they’re kind of on their own,” Farrell said of his son, who was diagnosed with AS as a child. “All the safeguards that are put in place, special ed classes, that all goes away, so you’re left with a young adult who should be an integrated part of our modern society and more often than not is left behind,” he added in his path-breaking interview with People.
The same aspect of his family’s experience has also further fuelled his decision to share the Colin Farrell Foundation with the world as a means of offering support for adult children with such disabilities. The initiative seeks to provide advocacy, education, and innovative programs about such cases.
Farrell also confirmed that he speaks to his son, who “has perfect fluency with the English language and age-appropriate cognitive ability.” In hopes of wanting the “world to treat him with kindness and respect, the Irish star will serve as the president of the newly launched organisation.
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Here’s what we know about Angelman Syndrome.
What is Angelman Syndrome?
According to the Cleveland Clinic, the rare neuro-genetic disorder affects around one in 12,000 to 20,000 people. The National Institute of Neurological Disorders and Stroke lists the genetic disorder as named after Dr Harry Angelman, as he first reported the syndrome in 1965.
It primarily affects the diagnosed individual’s nervous system. Common defining symptoms include developmental delay, intellectual disability, severe speech impairment, problems with movement and balance (ataxia), recurrent seizures (epilepsy), a very happy demeanour with frequent laughter and a small head size (microcephaly).
The disorder is caused by a loss of function of the UBE3A gene, which offers instructions for making ubiquitin-protein ligase E3A, a protein vital in the development and function of the nervous system.
There is no therapeutic cure for the disorder. Most people with Angelman Syndrome (AS) reportedly understand what is said, but they often learn to communicate non-verbally and with communication devices.
People diagnosed with the disorder tend to have significant developmental delays, speech limitations and motor problems. However, their brains are anatomically correct. Today.Com reports that it is often misdiagnosed as cerebral palsy or autism.
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Moreover, as most AS cases are caused by gene mutation, it is not passed down from biological parents.
Gastrointestinal, orthopaedic and eye problems, hyperactivity and a short attention span are common among those with AS cases.
NINDS also notes that while infants with this disorder appear to be visibly normal at birth, they often have feeding problems initially. Showing developmental delays between 6-12 months of their life, people with AS usually begin experiencing seizures around 2-3 years of age.
Cleveland Clinic says that people with AS tend to have distinct facial features, including a small head, large tongue, wide mouth, widely spaced teeth, and a large lower jaw.
As there is no cure for the disorder, medical treatments focus on reducing seizures, anxiety and gastrointestinal issues while aiming to improve sleep. Medication and dietary therapies hope to target seizures, as sleep training may be introduced to treat sleep issues. Behaviour therapy is another go-to option.
