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Film Documents Life With Down Syndrome Like Never Before

Sean Bogart has been on camera since he was a year old.

His filmmaking aunt and uncle, Didi and Richard Dobbs, began taping him to help themselves and others understand what it meant to live with Down syndrome. Their 28 years of footage is now scattered throughout their upcoming documentary, “Sean So Far.” But somewhere along the way, the film stopped being about Down syndrome.

In the trailer below, Bogart, 28, is wearing a neck brace. He’s sitting on a couch discussing the X-rays that were taken after an upper spinal surgery he had for his atlantoaxial instability, a condition that people with Down syndrome have an increased chance of getting.

Bogart had to put triathlon training on hold for 8 weeks to have and recover from the surgery. In the clip below, his aunt asks him what it was like to see his X-rays.

“Well actually,” Bogart says matter-of-factly, “I thought, ‘I look good in bones.'”

Didi Dobbs recalls this moment to The Mighty. “Who says that?” she says. “Sean always finds a side of things I can’t see.”

Today, Bogart is back to training with his triathlon partner, 19-year-old Troy Sundwall. They met through Unified Sports, a program that pairs athletes with intellectual disabilities and athletes without disabilities.  Together, Bogart and Sundwall will be the only two triathletes from Connecticut participating in the 2014 Special Olympics USA Games in June in Princeton, N.J. Their friendship is also a focus of “Sean So Far.”

Troy & Sean talking (1)

Twenty-eight years ago, when Bogart was diagnosed with Down syndrome, his aunt and uncle searched for information on the genetic disorder.

“It was the 80s, there was no Internet and we couldn’t find anything,” Didi Dobbs told The Mighty. “And everything we did find referred to [Down syndrome] as ‘mongolism.'”

Originally, they meant for their footage to be used for a what-you-need-to-know-about-Down-syndrome type of film. But the scenes they’ve captured are anything but clinical. They’re about a person.

“The story of the triathlon is the backbone of this film,” Richard Dobbs told The Mighty. “But, really, the triathlon is a metaphor.  The film is about Down syndrome, sure, but it’s also about perseverance, about family, about friendship.”

“It’s about being human,” Didi Dobbs adds.

The documentary won’t be complete until Bogart and Sundwall cross the finish line in June. A preview trailer is below.

The Dobbses hope that when people see the film, they’ll begin to look at their nephew the way they do and the way his training partner does.

“Their friendship is so real. Troy sometimes forgets Sean has Down syndrome,” Didi Dobbs told The Mighty. “Sometimes I do, too. He’s just a person, a person who brings so much joy to life.”

“I think the film will be helpful for anyone today who’s just gotten a Down syndrome diagnosis,” Richard Dobbs adds. “There’s this universal theme about what it means to meet a challenge — that’s what we’re trying to show.”

For updates on “Sean So Far,” visit Facebook.

If you’re interested in donating to this film’s production, head here.