A Coldstream child with a rare and severe seizure disorder will be part of a B.C. telethon to raise money for children like her on Saturday.
Nine-year-old Bella Kruize was diagnosed with SM1CA epilepsy after presenting with seizures at 18 months of age. The genetic disorder affects only girls and has confounded doctors. Bella was one of the first girls in the world diagnosed with the illness. She was later diagnosed with global development delay and autism spectrum disorder.
Variety – the Children’s Charity is holding its 56th annual Show of Hearts Telethon on Saturday, Feb. 26, from 1 to 5:30 p.m. Bella will be featured in the telethon airing on Global BC.
Until recently, most of Bella’s young life had been spent in and out of hospital.
“Within six months (of being diagnosed) she was 28 times in hospital and twice airlifted to Children’s Hospital,” said Sandi Brandt, Bella’s grandmother who cares for her alongside her husband.
The seizures can last up to an hour and 40 minutes and they restrict Bella’s breathing. And once Bella’s has one serious seizure, it can take months or years to get control over subsequent seizures.
“In 2019, (doctors) did not think Bella was going to make it,” Brandt said. “I have lived with stress like you would not believe. When you see a child have seizures that’s hard enough, but when their lips start turning blue, their face starts turning blue, it’s awful.”
It’s been a tumultuous journey raising Bella for her grandparents, who stay by her side around the clock, ready to administer life-saving medicine if needed.
As if those challenges weren’t enough, their Killiney Beach home was destroyed by the White Rock Lake wildfire last August. Along with the rest of their possessions, the fire incinerated thousands of dollars worth of specialty equipment that helps Bella learn and stay safe while playing.
Lost in the fire was a specially designed chair that makes it easier to feed and teach Bella, along with foam playground mats to allow her to play without the risk of a life-threatening fall.
When Variety saw coverage of the Brandts’ home engulfed in flames, CEO Cally Wesson reached out to offer help. The Children’s Charity ended up replacing Bella’s feeding chair and play mats.
Now living in Coldstream, the gesture meant a great deal to the Brandts. It’s part of why they are grateful for the Show of Hearts initiative which aims to support children with all sorts of special needs.
“We’re so thankful and it’s such a good cause. These little kids, it’s heartbreaking to see what they go through,” Brandt said.
The family has received support from other groups as well, including the North Westside Fire Department, which named one of its trucks after Bella.
“These guys are fabulous. They took extra courses and did all sorts of things. I phoned 911 and they were at my house within five minutes helping to administer oxygen,” Brandt said.
Remarkably, the pandemic resulted in a breakthrough in understanding how Bella’s disorder functions, which has led to a vast improvement in her condition. It was found that keeping her away from crowds and other highly stimulating environments helps to control her seizures significantly.
“The pandemic, with her not getting all that stimulation, calmed the seizures right down,” Brandt said. “We keep her very low stimulated, and she is just growing in leaps and bounds.
“In the summer she couldn’t really walk by herself, but now she’s just running around the house.”
The Variety Show of Hearts initiative started Thursday, Feb. 24 and continues Saturday, Feb. 26 on Global BC. Last year’s telethon raised more than $6.6 million for kids with special needs. Donations can be made by calling toll-free at 310-KIDS as well as online or by texting “KIDS” to 45678 to make an automatic $20 contribution.