The space between Tahlia Smith’s immense suffering and any chance of recovery is smothered with a $100,000 price tag.
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For the past five years Tahlia has hosted the aggressive, and politically controversial, condition known as Lyme disease.
For Tahlia, this means her pale and frail body will convulse uncontrollably (up to 40 minutes, every one to two hours), her eyes will roll backwards and she will groan.
Her nausea is relentless, her leg tremors constant and her joint pain agonising. Her only sustenance is liquefied.
And with virtually no sign of improvement, the young Raworth woman’s only hope lies with a radical German treatment regime.
“We have to do all we can to get her there because Lyme disease is treatable in Germany,” Tahlia’s mother, Lee Smith, said.
“Tahlia also has two other bacterial infections because this parasite has been living in her body for so long. So while this treatment will kill off the Lyme disease it won’t destroy the co-infections.
“But something has to be better than nothing. Tahlia needs quality of life to some degree. It’s just so cruel, it’s really hard and life is hard for her.”
Caused by an infected tick bite, Lyme disease is both insidious and cruel.
It is believed Tahlia was infected while travelling to promote her performing arts career.
The jury is out on whether Tahlia was bitten in Australia or America.
“I went on a camp in Australia in 2009 and I collapsed and was taken to hospital.
“I also broke out into a rash so the doctors thought I might have swallowed something in water,” Tahlia said.
“But I also travelled to America in 2010 and got sick after that so no-one really knows.”
From here Tahlia became progressively worse and in 2013 suffered her first seizure.
Unfortunately, the diagnosis of Lyme disease is difficult with its symptoms mimicking a range of other illnesses.
It would take multiple misdiagnoses (Tahlia was diagnosed with everything from a burst ovarian cyst to a stroke) and 27 doctors before she knew what she was dealing with.
Adding insult to injury is the fact that treatment for Lyme disease is not funded by the Australian Government and some doctors believe the disease does not exist in Australia.
“It’s hurtful to hear these things, and it’s frustrating because this disease is every bit as bad as cancer but cancer has a cure,” Tahlia said.
“But you just have to push on. There are days where I struggle because I just don’t see myself getting better but there are a lot of other people out there who are just like me.”
A Lyme Awareness Evening (in support of Tahlia Smith) will be held at Maitland City Bowling Club on Saturday, July 18. For more information contact David Cliff on 0408490367, Debbie Mirisch on 0402213413 or email ashlee@bizsynergy.net.au.