Spinnakers Restaurant in Hillarys to host fundraiser for woman with rare illness

Spinnakers Restaurant in Hillarys to host fundraiser for woman with rare illness
Spinnakers Restaurant in Hillarys to host fundraiser for woman with rare illness
Spinnakers Restaurant in Hillarys to host fundraiser for woman with rare illness

ALEX Radovan moved from Perth to Sydney in 2011 to study communications, with a special interest in international poverty development studies.

She was active and healthy, going to the gym at least five days a week, had three jobs and was a student leader on campus.

But all this changed when she went on a research trip to Nepal.

Ms Radovan (23) remembers the day she was told she had meningitis.

She said it was incredibly hot (in the high 40C) and she was suffering severe headaches and was struggling to talk, move or even open her eyes.

She was taken to a local doctor who said she needed to get to a hospital straight away.

“We had to drive along a really bumpy road; it was so painful and it took us three hours to get there,” she said.

She was flown to Kathmandu where scans showed she had viral meningitis.

Six days later, her mother arrived to take her back to Australia for treatment.

She stayed in Perth with her family for about five months while she recovered.

Keen to get back to her studies and the new life she was making for herself, Ms Radovan returned to Sydney however, she was “not quite right”.

“I had recovered from the meningitis but I didn’t feel normal; I couldn’t put my finger on it, I just didn’t feel right,” she said.

Ms Radovan was struggling with tiredness and anxiety, which she thought was because of stress.

She then started having trouble reading and keeping up in conversations.

Over the following months, her health continued to deteriorate so she deferred her studies to return home to her family in Perth.

“I just wanted to be close to my family; I knew mum could help look after me,” she said.

“I had got to the point where it was too hard to cook for myself or clean and I really just wanted to sleep and my brain just didn’t seem to be functioning.”

Her health continued to deteriorate until she collapsed and was again taken to hospital.

She was diagnosed with postural orthostatic tachycardia syndrome (POTS); a debilitating illness that causes extreme fatigue, migraines and gastrointestinal issues as well as affecting heart rate and brain function.

“Alex has a severe form of POTS with a very wide range of symptoms, which consequently cause her to be confined to bed for extended periods and regular hospital stays,” family friend Tamara Burrell said.

“She can’t spend much time upright because her heart rate increases dramatically and she often faints without warning.

“Her pupils don’t dilate so she is affected by light and often suffers from temporary paralysis.

“The continuous and regular medical treatment Alex is receiving is traumatising and barely keeps her autonomic nervous system functioning.

“It is critical she receives specific and advanced treatment that will re-train her brain to self-regulate and help her reduce her reliance on expensive and acute medications – she is on 12 different medications.”

Ms Radovan’s family and friends are raising money to send her to a treatment centre in Dallas, USA.

“The goal of this program is to gain control of the autonomic nervous system without using invasive therapy or medication,” Ms Burrell said.

“While this treatment is not a cure, it will give Alex hope for a better future as she learns techniques that will help her body more effectively manage the symptoms of a damaged nervous system.

“This is the only medical centre in the world offering such a life changing treatment.”

Their next fundraising event – Pamper Me Please – is this Saturday at Spinnakers Restaurant in Hillarys.

From 6pm, guests will have access to a range of services including personal and hair stylists, make-up and nail artists, a beautician, masseuse, women’s wellness coach and glamour photographer.

There will also be models showing off the latest trends, finger food and drinks, auctions and prizes.

Tickets are $75 from bit.ly/2ahXQoH or call Tamara on 0428 939 646.

To donate, go to www.gofund.me/alexradovan.