Sunday marked Pulse Day, a global event aimed at raising awareness about cardiac arrhythmias, which has become one Vancouver family’s mission.
At six years old, Keira Jose was diagnosed with Brugada syndrome, a heart condition that can cause wild fluctuations in the heart’s rhythm. She is one of five girls in the world with the diagnosis.
The lack of understanding around conditions like hers spurred Keira’s family on to create a foundation in her name.
Keira’s mother, Sarah Jose, says the goal is to educate.
“When you have a heart attack, that’s usually like a plumbing issue. That’s with the actual heart itself. If we’re talking about cardiac arrest, we’re talking about the electrical, and that’s where we have the issue,” Sarah explained.
The ‘Kure’ Electrical Inherited Rare Arrhythmias, or KEIRA Foundation, set up an exhibit in downtown Vancouver Sunday, inviting people to try a couple of minutes of intense exercise and check their heart rates.
Keira’s own resting heart rate is 160 beats per minute. If she walks around the block, Sarah says, Keira’s heart rate can spike above 200 beats per minute — far above even a marathon runner’s maximum.
In the past four years, Keira has had four cardiac arrests, and even a simple fever can put her life in jeopardy.
“It’s deadly,” said Sarah.
“That could be it. But I can’t have that.”
The precarious nature of her condition and the penchant for people with Brugada syndrome, also sometimes known as Sudden Unexplained Nocturnal Death syndrome, to pass in their sleep means Sarah hasn’t rested easy for years.
“I’ve been losing sleep because I did not want to skip, literally, a beat.”
But after CityNews shared Keira’s story in December, the family has achieved some peace of mind. Sarah raised enough money to afford a vitals monitor, and the Mikey Foundation pitched in to repair the Joses’ automated external defibrillator (AED), which needed thousands of dollars’ worth of servicing.
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Sarah says she’s incredibly grateful, but she’s still at a loss to understand why the help didn’t come from the government.
“There are so many children that have been denied medical equipment like Keira, or medications, or things that they so desperately need.”
The Ministry of Social Development and Poverty Reduction is responsible for supplying British Columbians with medical equipment. But as of their last update in December, vitals, monitors and AEDs aren’t covered, and there’s no process to make exceptions.
“I want change. Everybody wants change, and they need to do better,” said Sarah.
The family’s next hurdle is raising money for an ECG machine, which is also ineligible for government assistance, with a price tag of approximately $23,000.
Despite the steep cost, Sarah says there’s no alternative.
“[We’re] trying to financially just give her everything that she needs to keep her alive.”