The family of a five-year-old girl with multiple disabilities said they have had to raise money to buy her a new wheelchair after waiting for more than two years to get one from the government.
Violet Le Mura, 32, from Brisbane, said the family is so desperate for the new chair for Dusty-Mae, five, she can’t wait for the one National Disability Insurance Scheme (NDIS) has promised - and has resorted to raising the money to buy one themselves.
Mrs Le Mura said they asked for the chair two years ago, as NDIS was preparing to take over from the previous disability service provider.
NDIS only approved her care plan last month - and the family has been told the chair could take a year to arrive.
While Dusty-Mae does have a wheelchair, the family needs one that they can get into cars and taxis. She is also getting too big for it.
The current one does not allow this, and due to her own health condition, Mrs Le Mura is unable to lift her daughter and out of the car anymore.
She also wants her little girl to have the freedom to move around by herself with an electric control - as currently, she has to be pushed everywhere as she doesn’t have the strength to push herself.
“We are just not coping,” she said.
“We have just been going through one hell after another.
“We’re very grateful for NDIS but unfortunately it just been too slow.
“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.”
Dusty-Mae was born prematurely with a range of health problems.
They include a condition called Burnside Butler syndrome.
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 has had to have a bowel removed due to the condition, and has been told by doctors she could cause herself a life-threatening injury is she continues to lift up her daughter.
Her husband Michel runs a barber shop, so isn’t always around to help.
The family has raised more than half of the $12,000 to buy the new chair second hand.
The person selling it has agreed to send it before they receive the full amount.
It should arrive next week.
Mrs Le Mura, who has another son, Elwood, eight, said it will be an emotional moment when Dusty-Mae finally gets it.
“She, in her little life has never had the freedom of mobility to get from one spot to another,” she said.
“I push her everywhere. She’s been so limited by her disability for so long.
“I can’t even describe how amazing it’s going to be to see her to gain independence for the first time in her life.”
Dusty-Mae, who goes to school one day a week, has recently discovered something she loves - horse riding.
“We started riding for the disabled - it’s the one time she really does light up,” said her mother, who runs a YouTube channel called Being Dusty-Mae about her daughter and her conditions, which has thousands of subscribers.
The NDIS started to be rolled out by the Federal Government in July 2016 in a bid to reform the way disability support is funded.
An NDIS spokeswoman, said: “The NDIS roll out commenced in the Brisbane area in July 2018 with an acknowledgement that this would take 12 months for full transition.
“Under the bilateral arrangements, funding for disability related needs that individuals received from the State government continues until an NDIS plan is approved.
“Dusty-Mae’s NDIS plan was approved in April 2019 addressing known needs arising from her disability.
“The plan also includes funding for assessments to determine future assistive technology requirements, the outcomes of which can be incorporated at any time.
“Noting the change in circumstances, the NDIA will continue to work with Dusty-Mae and her family to ensure she receives the reasonable and necessary disability related supports she needs.”
Contact journalist Sarah Swain: Sswain@nine.com.au
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