A Vancouver mom is reluctantly reaching out to the public for help in supporting her daughter, who is fighting an extremely rare heart condition.
Sara Jose told Daily Hive exactly how rare the condition is.
“My 11-year-old daughter, Keira Elle, is one of only two little girls in the world diagnosed with Brugada Syndrome, an extremely rare and life-threatening heart arrhythmia that typically affects adult men, not children,” Jose said.
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The B.C. Ministry of Health is not able to provide the help that Keira needs.
“Keira now relies on medical support tools, a mobility scooter, and ongoing monitoring. Her doctors have requested several urgent, life-saving supports, but the ministry has said they do not provide them. We are now fighting to get her the care she needs to stay alive.”
The K.E.I.R.A. foundation has now been launched to raise awareness and garner support for the cause.
“K.E.I.R.A. was rooted [in] a personal campaign of Brugada awareness. Named after a 6-year-old girl from Vancouver, British Columbia, diagnosed with a rare arrhythmia, Brugada Syndrome,” the foundation website says, adding, “She has become one of the warrior princesses that pave the way for arrhythmia awareness.”
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The GoFundMe was just launched, and we asked Jose about it.
“This is a push from my friends and family to be upfront and more vocal and stop being so stubborn in asking for help to save my daughter,” she told Daily Hive.
The GoFundMe goes into tragic detail about some of the health scares that Keira has faced, like experiencing over 2,000 seizures, four cardiac arrests in four years, and “heart episodes where her chest pounds so violently you can feel it through her spine.”
Sara works in special effects makeup, and Keira now has dreams of becoming a makeup artist too.
“Keira Elle is a miracle. A survivor. Every day with her is a blessing. Please help me save my daughter,” her mom said in a release.
Keira has other dreams too, like travelling to Japan to experience the world of Sanrio.
“Her family hopes that with community support, time, and adequate medical care, she will live long enough to make that dream come true.”