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Home / Lifestyle

Young woman paralysed by a mystery illness, life 'turned upside down'

By Belinda Cleary
Daily Mail·
23 Nov, 2017 07:48 AM6 mins to read

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Doctors are baffled by the young woman's symptoms and don't know what caused them. Photo / @BrittanyLong

Doctors are baffled by the young woman's symptoms and don't know what caused them. Photo / @BrittanyLong

An 18-year-old woman has revealed how she lost her independence after being struck down by a mystery illness which took away her ability to move her legs or hold her head up on her own.

Brittany Long, from Melbourne, told Daily Mail Australia her symptoms began after a family holiday to Port Douglas in February 2016.

The illness started with vomiting in the week after the family returned home from their adventures on the Great Barrier Reef – then a few days later she woke up to find she had lost her voice, reports Daily Mail Australia.

"I couldn't make a noise for eight months," she said.

"Even if I tried to scream nothing would come out."

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Doctors didn't know what was causing her bizarre loss-of-voice and still don't.

The young woman danced at her debutante ball as a mute - unaware that in just a few short months the same strange illness would paralyse her whole body - and rob her of the use of her legs.

She was already learning to deal with chronic fatigue and had realised "waking up exhausted and going to bed exhausted" was her "new reality".

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When her voice finally came back in October after months of therapy her first thought was "thank god" she thought things were getting better even though the chronic exhaustion remained.

In November she went to the dentist for a checkup – where she fell unconscious and was rushed to hospital in an ambulance, she woke up three days later and found her whole world "upside down" and her whole body paralysed.

"I had told mum on the way there that I didn't feel well. Then when I was lying down in the chair I asked the dentist to put me back up straight because I felt dizzy and was seeing triple vision."

Brittany with her mother Sue and father Paul at her debutante ball - just months before she lost the use of her legs. Photo / @BrittanyLong
Brittany with her mother Sue and father Paul at her debutante ball - just months before she lost the use of her legs. Photo / @BrittanyLong

"I was unconscious in hospital for three days, I don't know how to explain it, it's like my body was there but I wasn't I was somewhere else."

The first thing she did when she woke up was wiggle her fingers, although she doesn't remember that.

"I sent a text to all my friends to let them know I was alive," she said.

That's when she realised she had lost her voice again and couldn't move most of her body.

She spent the next six weeks in hospital – where the reality of her situation became clearer every day. She regained the use of many of her muscles but had lost her legs - as well as her independence.

"My whole life was turned upside down in an instant – I had everything planned out, I had 60 hours up on my licence and I was looking forward to university," she said.

"Then I was in hospital, I couldn't move and I had to have nurses to shower me.

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"When my friends came they had to help feed me," she said.

Doctors kept telling the young woman she would be able to walk again - that she would regain the use of her legs just as mysteriously as she had her voice and her other limbs.

But three months later her condition became worse and she lost the ability to hold her own head.

Doctors kept telling the young woman she would be able to walk again, that she would regain the use of her legs. Photo / @BrittanyLong
Doctors kept telling the young woman she would be able to walk again, that she would regain the use of her legs. Photo / @BrittanyLong

"I was at school and it just slumped forward - now I need a brace to hold it – or to lean it against a wall," she said.

Doctors don't know what caused her body to shut down – putting the freak incident down to stress or being bitten by something in the tropics.

"I just need to walk again, that is my number one goal," she said.

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"I have just turned 18. I should be driving myself around not relying on everybody else.

"I am most upset about how it has changed the dynamics of my family – my mum, dad and brother have all been effected," she said.

Looking back through memories on Facebook reminds her what she has lost.

"When it came to my one-year anniversary of not being able to walk it was hard to fathom," she said.

Brittany jumping for joy during her holiday to Port Douglas shortly before her life was turned upside down with sickness. Photo / @BrittanyLong
Brittany jumping for joy during her holiday to Port Douglas shortly before her life was turned upside down with sickness. Photo / @BrittanyLong

Photographs of the amazing family holiday on the Great Barrier Reef show the stark contrast between her new and old life.

She is pictured scuba diving, running and jumping – like the regular healthy teenager she was.

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Even photographs of her debutante ball taken just three months before she lost movement in her legs make her realise what she has lost.

"My voice disappearing was on thing, but at least I could walk.

"It's the simple things I miss. I love the beach but on hot days I can't get anywhere near the water, I used to love being with my friends but being in a wheelchair makes that difficult," she said.

"I don't know what to think anymore I am over it – but it has made me realise it is the simple things we take for granted."

She is also grateful for the new friendships forged through the Heart Project. Photo / @BrittanyLong
She is also grateful for the new friendships forged through the Heart Project. Photo / @BrittanyLong

There has been some light in the darkness for Brittany – during her long stint in hospital she met photographers from the Heart Project and this fuelled her passion for photography.

Karen Alsop and the team have provided incredible photographic opportunities and training – a small slice of independence for the teenager who is determined to walk again.

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"I feel so grateful that I am able to help other sick kids with my photography, Karen has taken me under her wing – and it is a wonderful opportunity.

"It is the best thing to come out of my illness."

The Heart Project uses photography to make the lives of sick children brighter.

"It has given me something to look forward to," Brittany said.

Brittany has also been loyally supported by her friends who have remained by her side through the ups and downs of the illness, making her suffering easier to bear.

She is also grateful for the new friendships forged through the Heart Project.

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Timeline of symptoms

February 2016 - Brittany felt sick in the days after returning to Melbourne from Queensland
Days later she lost her voice
May - Her first visit to hospital after suffering other symptoms like chronic fatigue
October - Brittany's voice came back
November 9 - She became unconscious at the dentist.
November 11 - She woke up in hospital, she couldn't speak or move anything other than her fingers.
November-January - She slowly regained use of upper limbs and voice
February - She lost the ability to hold her own head up on her own

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