‘The First Two Questions I Asked Were…’: Colin Farrell On Raising A Son With Angelman Syndrome
Colin Farrell shares his journey of raising his son, James, who has Angelman syndrome, and launches a foundation to support families with intellectually disabled children.
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James was initially misdiagnosed with cerebral palsy
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Colin Farrell is launching a foundation
Colin Farrell did not even notice that there was something different about James, his son when he was born. Farrell considered it fortunate that James was still and quiet. “James was a very silent baby. And I just thought I’d hit the lottery,” says the actor. However, as James grew older, it became apparent that he was not like other children.
James wasn’t meeting normal developmental targets, according to Farrell. He couldn’t sit up or crawl. They decided to have him examined comprehensively at around eighteen months old. Initially, doctors diagnosed James with cerebral palsy because of the many shared symptoms.
However, at almost two and a half years, a pediatric neurologist suggested diagnosing Angelman syndrome which is an uncommon condition affecting the nervous system.
The result of the test was positive. Two things are remembered by Farrell: "I remember the first two questions I asked were, 'What’s the life expectancy and how much pain is involved?’” These answers brought some relief; James would live a normal life till death and avoid pain in his physical body.
But typically Angelman syndrome includes seizures which have been a challenging issue for Farrell’s family as well as himself. Fortunately for them, though James has not had any epileptic episodes since 10-11 years ago this journey has been one full of difficulties.
Farrell will establish the Colin Farell Foundation to support families with adult kids having intellectual disabilities believing in advocacy for those people so they can have more opportunities and independence. Farrell talks to his son just like someone who knows everything by fully trusting his spirit alongside his fate which makes him make decisions.
James has achieved much against all odds throughout his entire life. “I’m proud of him every day because I just think he’s magic”, says Farell referring to James. His aim through this foundation therefore is ensuring James among others gets adequate support systems that would help them lead fulfilled lives.
This has been a very difficult but valuable experience for Farrell. He hopes that by telling his story and establishing the foundation, he can make a difference in other families facing the same challenges. It is not just a cause for Farell rather than honoring his son’s spirit and hard work too.
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