Angelman Syndrome: What to Know About Colin Farrell’s Son’s Condition

Colin Farrell has opened up his house and spoken openly about his life with his son James, who suffers from Angelman syndrome.

James was only a child when he was diagnosed with the uncommon neurogenetic disease. Now 20, his family still struggles to give him the support he “deserves and should rightfully have,” Farrell, 48, tells PEOPLE in this week’s issue.

“I hope the world is kind to James. “I want the world to treat him with kindness and respect,” states the actor, who has been the driving force behind raising awareness of Angelman syndrome.

“I’m very private,” Farrell says PEOPLE, describing his house as a secure zone. “But I believe that if James understood this would help other families and children with support needs, he’d say, ‘Dad, why are you asking? It’s a no-brainer.'”

Angelman syndrome is a rare neurogenetic disease caused by an insertion or deletion of the ubiquitin protein ligase E3A (UBE3A) gene on the 15th chromosome. It affects one in every 15,000 people.

Understanding Angelman Syndrome: Symptoms, Misdiagnoses, and Challenges

According to the Mayo Clinic, the disease causes important developmental delays and is often detected when a baby is not walking or talking between the ages of 6 and 12 months.

It can cause difficulty walking, talking, and eating, as well as seizures, balance concerns, excessive laughing, sleep problems, scoliosis, and obesity due to reduced flexibility.

Angel’s disorder combines symptoms and includes other conditions such as autism, cerebral palsy, and Prader-Willi syndrome, and is responsible for 50% of first misdiagnoses, according to the Angelman Syndrome Foundation.

“Angelman syndrome is difficult to diagnose,” Paula Evans, CEO of the newly founded Colin Farrell Foundation, tells PEOPLE. “It doesn’t appear in prenatal testing unless you specifically know what to look for.”

Children with the disease are generally not diagnosed until they are between the ages of three and seven. It is validated by a genetic blood test. Early intervention is critical once a Angelman Syndrome Diagnosis has been confirmed.

Although angel’s disorder has no cure, it can be treated by controlling symptoms and treating developmental abnormalities.

This may involve anti-seizure drugs, occupational and physical therapy, speech therapy, behavioral therapy, training to sleep or sleep management medications, and other treatments.

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Navigating Angelman Syndrome: Finding Community and Personalized Care

Doing research and connecting with a community helped Farrell understand how to best care for his baby. James began walking at age four and has not had epilepsy in a decade.

Despite being nonverbal, he feeds himself and can communicate and express affection.

“With angel’s disorder, not every child looks the same,” explains the doctor. “It’s a broad spectrum of qualities that come with the condition, but you can start focusing in on your child so that you can handle your child as an individual under an umbrella of the wealth of information that’s being collected  the condition that they may have.”

“Rare disease by its nature indicates that in your community, you’re probably not going to find someone that has any shared experience in what you’re dealing with,” Evans says. “So a sense of community and being able to connect and share tips and strategies, it’s critical.”

People with Angelman syndrome have a normal life expectation, although they will require long-term care.

However, Farrell says that when James turns 21 in September, he will no longer be eligible for many of the support systems available to families with support needs children.

“Once your child turns 21, they’re essentially on their own,” he said. “All the safeguards, like special education classes, disappear. You’re left with a young adult who should be integrated into society but is often left behind.”

That is, in part, why Farrell is establishing the Colin Farrell Foundation to help adult children with intellectual disabilities via advocacy, education, and creative programs.

This actor has “for years wanted to develop a concept that offers greater opportunities for families with a child with support needs to receive the support they deserve, essentially assistance in all areas of life,” he states.

James and others like him have “earned the right to more individuality and autonomy in life, as well as a stronger sense of community.”

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Frequently Asked Questions

What is Angelman Syndrome?

Angelman Syndrome is a rare neurodevelopmental disorder affecting the nervous system. Individuals with AS often exhibit developmental delays, intellectual disability, severe speech impairment, and problems with balance and movement.

Other common Angelman Syndrome Characteristics include seizures, sleep disturbances, and a happy, excitable demeanor.

What causes Angelman Syndrome?

In most cases, Angelman Syndrome is caused by the loss of function of the maternal copy of the UBE3A gene. However, other genetic factors can also contribute to the condition. These may include deletions, duplications, or mutations within the UBE3A gene or imprinting defects affecting this region.

Are there treatments for Angelman Syndrome?

Currently, there’s no cure for Angelman Syndrome, but various Angelman Syndrome Therapies and Angelman treatment can help manage symptoms.

These include medications to control seizures, physical and occupational therapy to improve motor skills, speech therapy to enhance communication, and behavioral interventions to address challenges. Research is ongoing to develop targeted treatments.

What is the life expectancy for Angelman Syndrome?

People with Angelman Syndrome typically have a normal life expectancy. While the condition doesn’t directly shorten life, individuals often require lifelong care due to the challenges associated with the disorder.

Managing conditions like seizures and preventing accidents is crucial for a good quality of life.

Can Someone with Angelman Syndrome Live Alone?

While individuals with angel’s disorder vary greatly in their abilities, independent living is typically challenging due to cognitive and physical limitations. Many require lifelong support.

However, with appropriate care and support, some individuals may be able to live with a high level of independence in supervised settings.

What is Angelman Syndrome Behavior?

Individuals with Angelman Syndrome often show unique habits. They are often cheerful and enthusiastic, with frequent smiles, laughter, and hand flapping.

Common symptoms include hyperactivity, a short attention span, and sleep problems. Although difficult, these behaviors may be handled with behavioral therapy and understanding.

Can People with Angelman Syndrome Understand?

Yes, individuals with angel’s disorder can understand and receive information. While speech difficulty is common, many people learn appropriate communication techniques.

They frequently use gestures, facial expressions, and other forms of communication to express their knowledge. Initial support and help can help them understand and communicate more effectively.

How Common is Angelman Syndrome?

Angelman syndrome is a rare genetic disorder affecting approximately 1 in 12,000 to 20,000 people. While it’s uncommon, it’s essential to raise awareness to improve understanding and support for individuals with AS and their families.

Early diagnosis and intervention are crucial for optimal outcomes.