What is Angelman syndrome, the rare disorder Colin Farrell’s son has?

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Actor Colin Farrell is launching a foundation to support people with intellectual disabilities, inspired by his son James, who has a rare neurological condition 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 said that many social supports that exist for children with intellectual disabilities end 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 – prompted him to take action.

The Colin Farrell Foundation will advocate for increased Medicaid funding and expanded housing access for people with intellectual disabilities and higher wages for professional caretakers.

What is Angelman syndrome?

Angelman syndrome is a rare neurological condition caused by changes to a gene responsible for brain development. The syndrome affects the nervous system and causes severe physical and learning disabilities. There is no known cure or treatment, other than therapies to reduce symptoms such as seizures and gastrointestinal issues.

The condition occurs in about one in 15,000 births, or 500,000 people worldwide, according to the Angelman Syndrome Foundation in Aurora, Ill. Life expectancy for affected individuals is normal.

It is named for Harry Angelman, the British doctor who first identified it in 1965.

What are the symptoms of Angelman syndrome?

Symptoms, according to the National Institute of Neurological Disorders and Stroke, include developmental delays, intellectual disabilities, severe speech impairment, problems with balance, seizures, and gastrointestinal, orthopedic and eye problems. Some people may exhibit unexplained behaviors, “such as hand flapping and arms uplifted while walking,” according to the Mayo Clinic.

Although patients require lifelong care, some symptoms such as sleeping problems or seizures become less severe with age.

“James was a … very silent baby … he didn’t make any sounds at all. I just thought I’d hit the lottery, you know, I thought I have a chill child 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 stay up on his legs at all, so we knew something was up.”

James took his first steps two weeks shy of his fourth birthday, Farrell said. “It was so profound,” he said as his eyes welled up with tears.

Other signs can include frequent laughter without stimuli, a tendency to stick the tongue out, and skin, hair and eyes that are paler than other family members’, according to Britain’s National Health Service.

Blood tests can confirm diagnoses. Most babies do not show symptoms at birth.

What causes Angelman syndrome?

It is most often caused by changes to a gene known as the UBE3A gene.

Usually, a child receives two copies of a gene, one from each parent. Angelman syndrome occurs 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 nonprofit.

Researchers often don’t know the direct cause of the genetic changes resulting in Angelman syndrome, although family history of the condition may increase the risk.

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