Australia: Family of girl who is the only person in the world suffering from serious disability take drastic measures after she's forced to wait TWO YEARS for a special wheelchair - PressFrom - Australia
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AustraliaFamily of girl who is the only person in the world suffering from serious disability take drastic measures after she's forced to wait TWO YEARS for a special wheelchair

23:01  15 may  2019
23:01  15 may  2019 Source:   dailymail.co.uk

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The family of a five-year-old girl suffering from serious disabilities have been forced to raise money online after waiting more than two years for a government-funded wheelchair.

Family of girl who is the only person in the world suffering from serious disability take drastic measures after she's forced to wait TWO YEARS for a special wheelchair© Provided by Associated Newspapers Limited Dusty-Mae Le Mura (pictured with family), from Brisbane, has lived her short life 100 per cent wheel chair dependent and has not experienced 'pain-free mobility' Dusty-Mae Le Mura, from Brisbane, has lived her short life 100 per cent wheel chair dependent and has never experienced 'pain-free mobility'.

The little girl continues to grow and is in need of a more powerful wheelchair which will allow easy transportation in and out of cars, easing the burden of day-to-day movement.

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Despite being promised a new chair by the National Disability Insurance Scheme (NDIS), her concerned parents decided they couldn't wait any longer.

A Go Fund Me page was launched on behalf the parents on May 3 to raise $12,000 for a powerchair.

'Dusty-Mae is an almost six-year-old, funny and determined little girl growing up with complex medical challenges,' the page says.

'Dusty's Mum and Dad are loving parents and devoted advocates for their daughter, the sunshine of their lives.'

Violet, Dusty-Mae's mother, has her own medical conditions and struggles to physically lift her daughter.

'No more can she lift without causing severe and permanent injury to herself,' the Go Fund Me continues.

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'They need a self propelling wheelchair with car mounts.'

'It's going to cost 12 thousand dollars and they need it now.'

In under two weeks the page has rallied up more than $8,000 and the family were able to lock in a second-hand wheelchair for Dusty-Mae.

Violet announced the exciting news on YouTube on Monday but said the family was 'not yet out of the woods'.

Family of girl who is the only person in the world suffering from serious disability take drastic measures after she's forced to wait TWO YEARS for a special wheelchair© Provided by Associated Newspapers Limited In a video shared on Tuesday, Violent tells an ecstatic Dusty-Mae about the impending arrival of the chair

'We need another $1,500 in the Go Fund Me because the owner of the wheelchair has been kind enough to dramatically reduce the price and to take half of the payment first.'

In a video shared on Tuesday, Violet tells Dusty-Mae about the impending arrival of the chair.

'Are you excited?' she asks Dusty-Mae who excitedly throws her arms into the air.

'You're going to be able to get around for the first time in your entire life without needing someone to help you with everything.

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'You can do it yourself.'

According to the Go Fund Me, Dusty-Mae's range of health problems include - but are not limited to - autism, cerebral palsy, Elher Danlos Syndrome, epilepsy and Burnside Butler syndrome.

Burnside Butler syndrome means she is missing genes on one chromosome and has extra genes on another.

Her combination of health problems is not understood to affect anyone else in the world.

Violet told Nine News the family had not been coping while waiting for the wheelchair.

'We're very grateful for NDIS but unfortunately it just been too slow,' she said.

'Eventually her wheelchair will come, but I'm told to expect a minimum of 12 months.

'We are approved for it, but we just can't get to it.'

Daily Mail Australia has contacted NDIS for comment.

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