Kempsey brothers Toby and Hunter Tyne have been living with a rare debilitating disorder all their lives, and they believe the care they require isn't being adequately provided by the National Disability Insurance Agency (NDIA).
"A lot of the responsibility is falling on me, I know they are my sons, but I'm not sure if I can provide the proper professional support Toby needs," mother Angie told the Argus.
Spondylo-Ocular Syndrome can cause bone fragility, cataracts, hearing defects and a host of other life-altering symptoms; even the slightest fall can cause severe bone breaks.
A fact which Toby knows all too well, after spending most of last year in the hospital due to bone breaks, he is confined to a wheelchair and needs a high level of care.
"At the moment, Toby is only covered under the NDIS for one support worker, for five to six hours, he needs more time and another support worker," Angie said.
"I'm needed at home nearly 24 hours a day, and I can't receive carer payments from Centrelink or NDIS for Toby, because under the guidelines, the situation isn't classed as an extreme circumstance.
"I don't know what to do; we already have to fight for every little thing; it's exhausting and extremely stressful on top of everything else."
The Tynes are grateful for what support they are receiving, but Angie believes that the eligibility requirements are inadequate to judge individual circumstances.
I started having problems at three, and for years I was misdiagnosed, it wasn't until about five years ago they classified Spondylo-Ocular Syndrome.Toby Tyne
"I believe Toby's specific circumstances haven't been taken into account; his mobility has changed significantly since his last stint in the hospital," she said.
"They appear to use blanket rules for everyone, rather than assessing an individual's needs.
"The alternative to having him at home with two carers would be to have him at an assisted living facility, and that would cost far more than just paying for home care and his home hydrotherapy.
"If I weren't here, they would need to pay two people. I feel as a whole; parents are left to fend for themselves, we are looked at as unpaid carers and expected to perform all the duties of a trained carer."
Spondylo-Ocular Syndrome wasn't properly recognised for years, and Toby and Hunter are the first two people in the world to be officially diagnosed with the disorder.
"I started having problems at three, and for years I was misdiagnosed, it wasn't until about five years ago they classified Spondylo-Ocular Syndrome," Toby said.
We are one of a kind.Hunter Tyne
"They've written a medical journal about me, Hunter and I were the first two people in the world to be diagnosed with it."
"We are one of a kind," Hunter said.
Despite the battle they now face in getting the care they need, and with the disorder eating away at them from the inside, the brothers are trying to focus on something else, like helping others.
"I'm hoping to go to TAFE and study mental health, I'm also looking at volunteering at the hospital, and hopefully helping others deal with their own hardships," Toby said.
"I'm in my last year of school after that I would like to get my RSA and RCG, I'm also thinking about volunteering as an auctioneer and maybe becoming a teacher," Hunter said.
"We have both missed big chunks of school because of Spondylo-Ocular Syndrome, but I think I can still offer a great deal to the profession."
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