Exclusive: Disabled child finally gets wheelchair her family had to fundraise for, after two year NDIS wait
The family of a disabled child have finally got her the wheelchair she needs - after fundraising to pay for it.
Dusty-Mae Le Mura, five, from Brisbane has multiple disabilities, but her family had been waiting two years for a motorised wheelchair from the government.
Dusty-Mae, 5, in her new wheelchair, which the family had to raise money to buy. Facebook
As reported by nine.com.au, they were told by the National Disability Insurance Scheme (NDIS) they were approved for it- but it would take another year to arrive.
Unable to cope with her old chair any longer - it was too small and wouldn’t go in the car - they launched a fundraising appeal to gather $12,000 for a second hand one.
With the money now raised, the wheelchair has arrived.
Dusty-Mae’s mother, Violet Le Mura, 32, said it was an incredible moment seeing her daughter use it for the first time.
“I’ve never cried so many happy tears,” she told nine.com.au.
Dusty-Mae Le Mura, five, from Brisbane has multiple disabilities, but her family had been waiting two years for a motorised wheelchair from the government. Supplied
“She’s absolutely over the moon. She wants to be in it constantly - it’s going to take a bit to learn to drive it but she’s getting there.
“Seeing her light up, getting that freedom for the first time is amazing.”
Mrs Le Mura, whose husband Michel runs a barbers, said for the first time Dusty-Mae is able to play with her brother Elwood, 12.
Unable to cope with her old chair any longer - it was too small and wouldn’t go in the car - they launched a fundraising appeal to gather $12,000 for a second hand one. Supplied
She can speed alongside him as he rides his skateboard.
“They’ve never been able to play together as siblings so to see them finally connect on that level,” she said.
“Everyone’s generosity to give is wonderful.”
Dusty-Mae was born prematurely with a range of health problems.
They include a condition called Burnside Butler syndrome.
Dusty-Mae was born prematurely with a range of health problems. Supplied
It means she has missing genes on one chromosome and extra genes on another. The combination she has is not believed to affect anybody else in the world.
She also has cerebral palsy, epilepsy and gastroparesis; which means her stomach muscles don’t work. She is also currently undergoing tests on a cyst to see if it is cancerous.
Dusty-Mae has an intellectual age of just two or three, and her speech is limited.
She also shares a condition with her mother, called Elhers Danlos Syndrome.
It affects the body’s connective tissues such as skin, joints and blood and means both mother and daughter have a feeding tube.
Mrs Le Mura’s condition also meant it was dangerous for her to continue to pick up her growing daughter to get her in the car.
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