'It's a dream come true': B.C. composer living with debilitating condition earns red carpet recognition

Ari Kinarthy never imagined he'd become the focus of photographers on a red carpet, back when he was a boy fighting to have fun.

“It feels very frustrating to be left out of activities that my friends can do an I can’t,” Ari said when CTV News first met him a few years ago.

Spinal Muscular Atrophy was making Ari unable to play video games with his hands, until he found technology that allowed him to control the action onscreen with the movement of his breath.

“Now I can play almost any game out there and my friends can join me,” Ari said. “And we have a great time.”

But finding a pleasurable pastime couldn’t compare to discovering his true passion.

“I really just want to impact people deeply,” Ari says.

Although his condition was progressively weakening his muscles, this adaptive technology — along with music therapy — was strengthening Ari’s talent for composing.

“My dream is to write music for film,” Ari says.

So you can imagine how he felt when he received an unexpected message from a stranger offering to realize that dream.

“I thought it was a scam,” Ari recalls with a laugh.

Turns out the very real Salazar film company had heard about Ari’s music and wanted to collaborate.

“(Ari) wants to be regarded as an artist with a disability, not a disabled person who is an artist,” says Salazar director Jeff Petry. “And I think the film really focuses on that.”

The movie is called “Ari’s Theme,” and it documents how the artist, facing a condition that will shorten his life, races to compose a soundtrack to his most impactful memories, in the hopes of leaving a meaningful legacy.

“You only live once,” Ari says. “And it’s best to live it to the fullest.”

For Ari, that’s overcoming adversity to have the documentary picked to open the Vancouver International Film Festival, have his soundtrack performed live at the gala by members of the symphony, and earn a standing ovation when he appeared on stage.

“It’s a dream come true,” Ari smiles after driving his motorized wheelchair along the red carpet.

While the boy he once was never dared to dream so big, the man Ari now is hopes his new reality will inspire others.

“Always put yourself out there,” Ari says. “And open yourself to possibilities.”