Actor Colin Farrell is starting a charity to empower individuals with intellectual impairments, inspired by his son James, who has a rare neurological disorder called Angelman syndrome.
“I want the world to be kind to James,” Farrell, 48, said in an emotional interview with People magazine. “I want the world to treat him with kindness and respect.”
He noted that many social services that exist for children with intellectual impairments disappear when they reach age 21. “I obviously have a certain amount of means … and we still struggle with finding the kind of support that James deserves and should rightfully have,” Farrell said, adding that James’s age – 20 — spurred him to take action.
The Colin Farrell Foundation will lobby for enhanced Medicaid funding and broader housing access for persons with intellectual impairments and better compensation for professional carers.
What is Angelman syndrome?
Angelman syndrome is a rare neurological disorder caused by alterations to a gene crucial for brain development. The syndrome affects the nervous system and causes severe physical and learning disabilities. There is no known cure or therapy, other than medicines to alleviate symptoms such as seizures and gastrointestinal difficulties.
The illness occurs in around one in 15,000 births, or 500,000 individuals globally, according to the Angelman Syndrome Foundation in Aurora, Ill. Life expectancy for afflicted persons is normal.
It is named after Harry Angelman, the British doctor who initially detected it in 1965.
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What are the symptoms of Angelman syndrome?
Symptoms, according to the National Institute of Neurological Disorders and Stroke, include developmental delays, intellectual impairments, severe speech impairment, difficulty with balance, seizures, and gastrointestinal, orthopedic and ocular disorders. Some persons may display unexpected behaviors, “such as hand flapping and arms uplifted while walking,” according to the Mayo Clinic.
Although patients need lifetime care, certain symptoms such as sleeping issues or seizures grow less severe with age.
“James was a … very silent baby … he didn’t make any noises at all. I just assumed I’d struck the jackpot, you know, I thought I had a relaxed kid who’s not going to keep me up at night,” Farrell said.
But “he wasn’t hitting benchmarks, he couldn’t sit up … he couldn’t keep up on his legs at all, so we realised something was awry.”
James took his first steps two weeks short of his fourth birthday, Farrell recalled. “It was so profound,” he added as his eyes welled up with tears.
Other indicators might include frequent laughing without stimulus, a propensity to stick the tongue out, and complexion, hair and eyes that are lighter than other family members’, according to Britain’s National Health Service.
Blood testing may confirm diagnosis. Most newborns do not display symptoms at birth.
What causes Angelman syndrome?
It is most typically caused by mutations to a gene known as the UBE3A gene.
Usually, a kid obtains two copies of a gene, one from each parent. Angelman syndrome arises when there is a missing maternal copy of the UBE3A gene or damage to the maternal copy, which is the only active copy of this gene, according to the Mayo Clinic. “Rarely, Angelman syndrome is caused when two paternal copies of the gene are passed down instead of one from each parent,” according to the organisation.
Researchers frequently don’t know the precise source of the genetic abnormalities leading in Angelman syndrome, but family history of the disorder may raise the risk.