https://www.dailymercury.com.au/news/hope-in-the-midst-of-long-search-for-answers/3914824/ BRACING for the unpredictable has become second nature to Victoria Harris. Such is the terrifying nature of her daughter’s health condition, she is on tenterhooks day and night. But there will be fewer sleepless nights ahead now that five-year-old Gracie Rupert is in line to have a support dog watching over her. Gracie has been diagnosed with a rare genetic epilepsy disorder – CDKL5, which affects only 600 people worldwide. Because the onset of her seizures are random, her parents often go without sleep to ensure a night-time incident does not turn into something more sinister. Often the seizures are not visible and Gracie stops breathing – particularly if many occur in a short space of time.
In April the family began raising funds for a support dog trained to monitor Gracie while she sleeps and inform the family when she needs help. They required $20,000 to make this a reality. In the last week of November they achieved their goal and are now on a waiting list. While it could be another year before Gracie has her support dog, Ms Harris said when that time came it would make all the difference to the young family. The fundraising came from a variety of channels – a GoFundMe page, trivia nights, raffles, fun runs, bake sales and a $5000 grant from the POP Foundation. “It has been absolutely fantastic and a real eye-opener to know we have support within the community,” Ms Harris said. “I put a post out at the end of the year to thank everyone but it was really hard to do that. “We’ve had support from so many people – from really small business, friends, strangers and big businesses – it has just been amazing.” Gracie’s seizures began when she was two, and doctors have been unable to pinpoint the gene that is causing her problems. Delayed development, cortical vision impairment and mobility issues have followed the epileptic episode. Since her diagnosis Gracie has been put on seven different types of medication, to no avail, but her most recent treatment has shown promise. A week ago she suffered some seizures, but before that she was almost two weeks without one – including an episode-free Christmas. “They’re obviously unpredictable and we certainly haven’t gotten any more sleep, but I guess you just become more confident in handling them,” Ms Harris said. “We know what to expect and you become more well-practised unfortunately. “They’re still obviously really stressful when one of them happens; you hope it’s just one that happens and not clusters of them, but we’ve learnt to deal with them down. “(But) she’s still a really happy little girl, always up and always smiling – nothing really beats her.”
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AuthorA selection of my general news content. My main round was health, however I frequently covered weather, crime, politics and general human interest. Archives
January 2020
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