Legacy of Alberta girl with rare disease lives on in new documentary

Sophia Syskakis was 15 years old when she went into cardiac arrest in 2014.

Now, an Edmonton documentary crew is telling her story in If My Heart Stopped Beating.

The film follows the teen’s family as they launch the Sophia Syskakis Foundation. The organization provides meals and toys during long days at the hospital for kids with pulmonary hypertension.

Sophia was born with the rare disease, which causes high blood pressure in the lungs.

“We started the foundation honouring my daughter’s memory,” Sophia’s mom Marisa DeLuca-Janas said.

“Because pulmonary hypertension is such a difficult and rare disease, I wanted to bring more awareness to it and the psychological impact it has on children and the burden it has on parents.”

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“When you’ve got to go to an appointment, you don’t sleep, you’re worried and you don’t want to show your child that.”

The documentary was produced, written and directed by Kris Smylie.

It will be screened on Friday, Nov. 24 at 6 p.m. in NAIT’s Shaw Theatre.