In a well-established case of positive celebrity influence, Colin Farrell’s personal life has opened the door to healthy conversations about a rare condition called Angelman syndrome (AS). The 48-year-old actor recently launched the Colin Farrell Foundation after drawing real-life inspiration from his family’s experience with intellectual disability.
The DC Penguins star spoke publicly for the first time about his 20-year-old son James’ diagnosis. Pharrell opened up about his son with his ex, model Kim Bordenave.
Her son, who will turn 21 in September, will soon age out of the support system offered to families with children with special needs.
“When your kid turns 21, he’s all on his own,” Farrell said of his son, who was diagnosed with AS in childhood. “All the safety measures, the special education classes, all of that goes away, so you’re left with a young adult who should be an integrated part of our modern society and often gets left behind,” he said in his path-breaking interview. People,
This aspect of his family’s experience further strengthened his decision to share the Colin Farrell Foundation with the world, to provide support to adult children with such disabilities. This initiative aims to provide advocacy, education, and innovative programs regarding such cases.
Farrell also confirmed that he speaks to his son, who is “fluent in the English language and has cognitive abilities appropriate for his age.” In hopes that “the world will treat him with kindness and respect,” the Irish star will serve as president of the newly launched organization.
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This is what we know about Angelman syndrome.
What is Angelman syndrome?
According to the Cleveland Clinic, this rare neuro-genetic disorder affects approximately one in 12,000 to 20,000 people. The National Institute of Neurological Disorders and Stroke lists this genetic disorder as follows: It is named after Dr. Harry Angelman, as he first described the syndrome in 1965.
It primarily affects the nervous system of the person diagnosed. Common defining symptoms include developmental delays, intellectual disability, severe speech impairment, problems with movement and balance (ataxia), recurrent seizures (epilepsy), overly happy demeanor with constant laughter, and a small head (microcephaly).
This disorder is caused by a loss of function of the UBE3A gene, which provides instructions for making ubiquitin-protein ligase E3A, a protein critical for the development and function of the nervous system.
There is no medical cure for this disorder. Most people with Angelman syndrome (AS) reportedly understand what is being said, but they often learn to communicate non-verbally and with communication devices.
People suffering from this disorder have significant developmental delays, difficulty speaking and motor problems. However, their brains are anatomically intact. It is often misdiagnosed as cerebral palsy or autism, reports Today.Com.
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Furthermore, since most AS cases are caused by gene mutations, it is not passed on from biological parents.
Gastrointestinal, bone, and eye problems, hyperactivity, and a short attention span are common in people with AS.
The NINDS also states that infants with this disorder appear normal at birth, but often have feeding problems early on. Showing developmental delays between 6-12 months of their lives, people with AS usually begin to have seizures around the age of 2-3 years.
The Cleveland Clinic says people with AS have distinctive facial features, including a small head, large tongue, wide mouth, widely spaced teeth and a large lower jaw.
Since there is no cure for this disorder, medical treatments focus on reducing seizures, anxiety, and gastrointestinal problems, while aiming to improve sleep. Medication and diet therapy are expected to target seizures, as can sleep training to treat sleep problems. Behavioral therapy is another option.
