Charles Boyle
While we all face challenges on life’s journey – triumph and defeat, love and loss – we have the great good fortune to be living in the beautiful Northern Rivers. As a community, we offer assistance to those in need and accept fellow travellers without prejudice; we try not to judge, but value true justice. Our social fabric is one of our great assets and it draws people from across the world.
So spare a thought for one of our mob, 11-year-old Josie Boyd of Ballina, whose life path is more difficult than most of us could ever imagine.
Josie was born with a rare and debilitating genetic disorder called GAN (Giant axonal neuropathy), which attacks the neural pathways in the brain and spine. It wasn’t a choice, it was the life she was born into.
Josie has a loving family
Josie has great difficulty doing the things we all take for granted – walking, playing, talking – even breathing, but she is supported by a loving family with doting parents and three siblings. GANS means that her life will be short and painful.
In 2013 Prime Minister Julia Gillard established the National Disability Insurance Scheme to provide full funding for necessary support needs of people with permanent and significant disabilities – people like Josie Boyd and thousands of other Australian citizens. $14.3 billion was committed to the scheme, to be funded by a 0.5 per cent increase in the Medicare levy.
In the first nine months, 5,400 disabled Australian benefitted from the scheme. Initially, it was estimated that the NDIS would employ 10,000 staff, but when Tony Abbot took power in 2013 the staff level was capped at 3,000. Then, in the 2016 Budget delivered by Treasurer Scott Morrison, $2.1 billion dollars was cut from the NDIS. In 2015, Josie was promised a wheelchair, but it never arrived.
Under the Liberal coalition government, cuts to the NDIS keept coming until in 2019 Treasurer Josh Frydenberg announced a budget surplus of $7.1 billion. According to Greens spokesman on Disability Services, Senator Jordan Steel-John, 23 per cent of the budget surplus ($ 2.1 billion) came from cuts to the NDIS. ‘That surplus is built on the backs of disabled people. That’s sick’.
While politicians played political football with the lives of disabled Australians, Josie still didn’t receive her wheelchair, so her condition deteriorated.
Josie’s story shamed the NDIS
In July 2019 the ABC’s coverage of Josie’s story shamed the NDIS into finally delivering the promised electric wheelchair and a specialised bed. The wheelchair arrived at Josie’s school with great fanfare and many cameras, but it was too little, too late. Josie’s physiotherapy and occupational therapy funds have run out and she needs a breathing machine, a beach wheelchair and bath equipment. Two months ago Josie’s mother Naomi had to stop working as a teacher to care for her. This local family is doing it tough.
Because budget cuts denied Josie her wheelchair when she needed it, four years ago, her condition has seriously deteriorated. In a few weeks she will have a spinal fusion operation and have a rod inserted into her spine. She has a 30 to 50 per cent chance of surviving the operation.
Josie Boyd and her family are suffering, and they need emotional and financial support.
A disco and GoFundMe
The Ballina Fox Street Preschool has set up a GoFundMe page for Josie at: gofundme.com/f/y95mp-josie-needs-our-help. This isn’t for a holiday, or a new car – this is to pay for medical attention and equipment.
Lennox Head local Joanna Pinner, from Lash On Wax Off, heard about Josie and decided to help. She has organised a 70s & 80s disco at the Lennox Head Surf Club on Saturday, November 9, to raise funds. Tickets can be purchased online at: fundraising4josie.eventbookings.com.
Do your karma a favour. Share your good fortune by giving some joy to Josie Boyd.
For four decades The Echo has printed the stories some people loved, some people hated, and some pretended not to read. If you want us to keep telling the truth, the real truth, not the sugar-coated version. We’ll need your support to keep the presses rolling. 
