Josh Duffy (left) and Jake Jakubowski (right). Duffy is the subject of the documentary film, which looks at his life with Williams Syndrome and was produced by Jakubowski. C. Thacher Carter / The Times Record

A new documentary highlighting the life of a Brunswick man with Williams Syndrome aims to raise awareness about the rare genetic disorder.

The movie is almost entirely filmed in Brunswick, and focuses on Josh Duffy, who has lived in town for about 20 years. The film will premiere in early 2022.

Williams Syndrome impacts one in every 10,000 to 20,000 births in the United States, according to the National Organization for Rare Disorders. Symptoms range widely among individuals, impacting both physical and cognitive characteristics.

The documentary, “The Mayor: A Chronicle of Williams Syndrome with Josh Duffy,” is being produced by Jake Jakubowski, a Topsham resident and good friend of Duffy. The title of “mayor,” Jakubowski said, refers to Duffy’s reputation of being a well known and sociable character around Brunswick.

“Everybody in this town knows Josh, but they don’t know him. They don’t know his story, they don’t know the story of him growing up, and the trials and tribulations of dealing with having Williams Syndrome,” said Jakubowski. “I just want to spread the awareness. It’s a matter of locally having everybody understand who Josh really is, and how he operates.”

Jakubowski hopes the documentary can also inform a national audience, such as new parents who may have just found out their child has Williams.

Advertisement

According to Duffy, explaining the disorder and the impacts it has had on his life is difficult. Duffy said he has grappled with loneliness at times, and another challenge he has faced is not having a marriage or children. Music and dancing play an integral part in his life, Duffy said, although he also struggles with sensory issues.

“It’s a very emotional, very musical thing,” said Duffy. “It’s hard to describe in like five or six words.”

Duffy said that he’s happy to have a documentary made about him and joked that he is looking forward to his “15 minutes of fame,” while also, on a more serious note, raising awareness for the disorder. “(Jake) doesn’t play when it comes to filming,” Duffy added.

Terry Monkaba, the executive director of the Williams Syndrome Association, said that no two cases of the disorder are identical in symptoms, and that the impacts and severity of the syndrome affect people on a spectrum.

Formed in 1982, the association is based in Troy, Michigan, and offers resources worldwide for families and individuals impacted by Williams Syndrome.

Those with Williams are rarely able to live independently, Monkaba said, and common symptoms and characteristics include cardiovascular, gastro-intestinal and sensory issues, cognitive challenges, a love for music and rhythm as well as hyper-friendliness.

Advertisement

“Individuals with Williams have a real desire to please, and to make everyone around them happy,” said Monkaba. “On one side of it, they can be the mayor of the town and that’s super great, but the other side of that is that they can be easily taken advantage of.”

Monkaba estimated that between 25,000 and 30,000 individuals in the United States are diagnosed with Williams Syndrome, with one of them being her son, who she said has undergone six surgeries due to the syndrome.

“The most important thing is that people look past the cognitive challenges and see the person,” said Monkaba. “To have a group of individuals who are predominately individuals who see the glass as half full, who choose to look on the bright side, there’s a lot that we can learn from them.”

Jakubowski has a background in video production, he said, and the film was self-funded with the exception of one fundraising campaign for about $1,000.

Planning for the documentary began in January 2021, and the majority of filming took place over the spring and summer. About 30 people were interviewed, and it is scheduled to premiere on Jan. 5, 2022, at Bolos restaurant in Brunswick. The film will also be available for viewing free of charge on YouTube.


Only subscribers are eligible to post comments. Please subscribe or login to participate in the conversation. Here’s why.

Use the form below to reset your password. When you've submitted your account email, we will send an email with a reset code.