Online learning a hit with ailing girl

Terminally ill six-year-old embraces Zoom

For Calgarian Kierra Irvine and her six-year-old daughter Evanna, the COVID-19 pandemic came as yet another hurdle.

Evanna was born with a rare congenital heart defect that has since required her to stay nearly 600 nights in hospital and receive six open-heart surgeries.

When the last of those surgeries failed, Evanna received a terminal diagnosis and her health deteriorated further, forcing her parents to pull her out of her kindergarten classes at Emily Follensbee School in January.

Evanna was enrolled in a specialty education program at the GRIT Calgary Society, but the novel coronavirus presented another roadblock when it emerged in Alberta in March.

But to the surprise of Irvine, Evanna began to anticipate and enjoy her Zoom school meetings, walking herself and her ventilator to her kitchen-table classroom.

“When the pandemic came in, we just said, ‘Are you kidding me? Can we not have a break?’ ” Irvine said.

“But it hasn’t been the worst thing in the world. To see our daughter, in the last handful of weeks, come to expect this routine and get upset if there isn’t school on a Saturday or Sunday, it’s been kind of a nice, tender mercy to see that she is still getting something out of it.”

Irvine said it’s important to her family that Evanna has the opportunity to have some “normal” experiences as she grows up and to give her a routine she can find joy in.

“So much of life is very abnormal in every way, and the fact that we were able to go to a physical school was such a highlight to us,” Irvine said.

“With her life expectancy, we don’t know if we’ll see another birthday. So seeing her start kindergarten was exciting.”

Irvine credits the staff at GRIT, including her developmental specialist Ashley, for the success Evanna has had with virtual learning.

Kim Suvanto, the society’s director of education, said they create specialized learning plans for each of their students.

The coronavirus made teaching difficult for the hands-on school, but Suvanto says there have been “incredible” success stories.

“She truly is one of our huge success stories because Evanna is a very determined little gal, and with all the things she’s gone through, she’s so resilient,” she said.

“Out of this, we have a little girl who seeks her virtual programming … it’s just setting up such good foundational skills as she prepares for her school next year.”

In some ways, Irvine thinks the COVID-19 pandemic and the emergence of social distancing has given Albertans an impression of the lifestyle she and her family have adopted over the past six years.

“Everyone was kind of getting a taste of what immunocompromised families live on a day-to-day basis,” she said. “We’re very careful on outings we do take, especially during cold and flu season. We kind of hibernate.”