(NewsNation) — Actor Colin Farrell is shining a spotlight on the rare neurological disorder Angelman syndrome with a new foundation inspired by his 20-year-old son James.
The Colin Farrell Foundation will provide support for adult children who have intellectual disabilities through advocacy and a variety of programs, Farrell told People Magazine in an in-depth interview where he opened up about his life taking care of his son.
“This is the first time I’ve spoken about it, and obviously the only reason I’m speaking is I can’t ask James if he wants to do this,” he said. “I speak to James as if he’s 20 and has perfect fluency with the English language and age-appropriate cognitive ability. But I can’t discern a particular answer from him as to whether he’s comfortable with all this or not, so I have to make a call based on knowing James’s spirit and what kind of young man he is and the goodness that he has in his heart.”
People with Angelman syndrome can struggle with walking and balance disorders, gastrointestinal issues, seizures and little to no speech. Other developmental issues can become noticeable by the age of 6 – 12 months.
Angelman syndrome occurs in one in 15,000 live births or 500,000 people worldwide. It shares symptoms and characteristics with other disorders including autism, cerebral palsy and Prader-Willi syndrome, causing frequent misdiagnosis.
James “has worked so hard all his life, so hard,” Farrell adds. “Repetition, repetition, balance, his jerky gait. When he started feeding himself for the first time, his face looks like a Jackson Pollock by the end of it. But he gets it in, he feeds himself beautifully. I’m proud of him every day, because I just think he’s magic.”
Farrell says James and those like him have “earned the right to have a greater degree of individuality and autonomy on life, and a greater degree of community,” which he hopes to foster through his new foundation.