Sunday marked Pulse Day, a global event aimed at raising awareness about cardiac arrhythmias, which has become one Vancouver family\u2019s mission.<\/p>\n
At six years old, Keira Jose was diagnosed with Brugada syndrome, a heart condition that can cause wild fluctuations in the heart\u2019s rhythm. She is one of five girls in the world with the diagnosis.<\/p>\n
The lack of understanding around conditions like hers spurred Keira\u2019s family on to create a foundation in her name.<\/p>\n
Keira\u2019s mother, Sarah Jose, says the goal is to educate.<\/p>\n
\u201cWhen you have a heart attack, that\u2019s usually like a plumbing issue. That\u2019s with the actual heart itself. If we\u2019re talking about cardiac arrest, we\u2019re talking about the electrical, and that\u2019s where we have the issue,\u201d Sarah explained.<\/p>\n
The \u2018Kure\u2019 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.<\/p>\n
Keira\u2019s own resting heart rate is 160 beats per minute. If she walks around the block, Sarah says, Keira\u2019s heart rate can spike above 200 beats per minute \u2014 far above even a marathon runner\u2019s maximum.<\/p>\n
In the past four years, Keira has had four cardiac arrests, and even a simple fever can put her life in jeopardy.<\/p>\n
\u201cIt\u2019s deadly,\u201d said Sarah.<\/p>\n
\u201cThat could be it. But I can\u2019t have that.\u201d<\/p>\n
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\u2019t rested easy for years.<\/p>\n
\u201cI\u2019ve been losing sleep because I did not want to skip, literally, a beat.\u201d<\/p>\n
But after CityNews shared Keira\u2019s 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\u2019 automated external defibrillator (AED), which needed thousands of dollars\u2019 worth of servicing.<\/p>\n
Sarah says she\u2019s incredibly grateful, but she\u2019s still at a loss to understand why the help didn\u2019t come from the government.<\/p>\n
\u201cThere are so many children that have been denied medical equipment like Keira, or medications, or things that they so desperately need.\u201d<\/p>\n
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\u2019t covered, and there\u2019s no process to make exceptions.<\/p>\n
\u201cI want change. Everybody wants change, and they need to do better,\u201d said Sarah.<\/p>\n
The family\u2019s next hurdle is raising money for an ECG machine, which is also ineligible for government assistance, with a price tag of approximately $23,000.<\/p>\n
Despite the steep cost, Sarah says there\u2019s no alternative.<\/p>\n
\u201c[We\u2019re] trying to financially just give her everything that she needs to keep her alive.\u201d<\/p>\n","protected":false},"excerpt":{"rendered":"Sunday marked Pulse Day, a global event aimed at raising awareness about cardiac arrhythmias, which has become one…\n","protected":false},"author":2,"featured_media":509951,"comment_status":"","ping_status":"","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[194298],"tags":[49,48,55],"class_list":["post-509950","post","type-post","status-publish","format-standard","has-post-thumbnail","category-vancouver","tag-ca","tag-canada","tag-vancouver"],"_links":{"self":[{"href":"https:\/\/www.newsbeep.com\/ca\/wp-json\/wp\/v2\/posts\/509950","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.newsbeep.com\/ca\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.newsbeep.com\/ca\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/ca\/wp-json\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/ca\/wp-json\/wp\/v2\/comments?post=509950"}],"version-history":[{"count":0,"href":"https:\/\/www.newsbeep.com\/ca\/wp-json\/wp\/v2\/posts\/509950\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/ca\/wp-json\/wp\/v2\/media\/509951"}],"wp:attachment":[{"href":"https:\/\/www.newsbeep.com\/ca\/wp-json\/wp\/v2\/media?parent=509950"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.newsbeep.com\/ca\/wp-json\/wp\/v2\/categories?post=509950"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.newsbeep.com\/ca\/wp-json\/wp\/v2\/tags?post=509950"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}