Despite her child being the first to leave PMH under the National Disability Insurance Scheme, Koongamia mother Georgie Ellerby has turned to crowd-funding to buy therapeutic aides her daughter desperately needs.
Poppie Warnock was born with CHARGE Syndrome, a complex genetic syndrome with a pattern of features and in Poppie’s case, it was apparent as soon as she was born.
Her oesophagus pocketed, not connecting to her stomach and a pair of fistulas in her oesophagus channelled saliva directly into her airway.
One eye is much smaller than the other and she has no earlobes, and until a tracheostomy was performed when she was 15 weeks old, her airways would collapse every time she cried.
In the first year of her life, Poppie spent just 26 days at home, and despite being born on December 11, Georgie would prefer to recognise December 23, the day her daughter officially came home, to be her birthday.
Almost three years and 16 surgeries later, Poppie still requires 24-hour care, with a rotating cast of five carers funded by the NDIS providing support to Georgie and Poppie’s father, Jake Warnock.
Despite all the love in the world, the task of caring for Poppie is exhausting for Georgie.
It also means her time with Jake and her four-and-a-half year old son Lincoln is compromised, and she believes the NDIS needs to have a better understanding of an individual situation.
“There’s a very big difference between having carers in the home and respite,” she said.
“That’s a big thing we’ve been trying to explain to the NDIS, respite is being completely removed from the situation.
“Carers are there to help you, but when we go to bed, we still hear her alarms all night, we still hear her suction pump, we still hear her feeding pump.”
Many mothers – and fathers – know the exhaustion that comes with having a young child, but having a child with a severe disability takes that to another level.
“People say welcome to having a child but that’s not it, because I did, I could bring Lincoln into bed and give him a bottle,” Georgie said.
“Poppie’s attached to feed pumps, oxygen monitors, I can’t just bring her into my room, and I can’t just pick her out of her cot and bring her in, you have to be mentally switched on.
“I can’t just wake up and not be switched on.
“There have been times where the carers have called and said she’s not breathing, so I have to wake up and snap out of it and be switched on.
“Ninety per cent of the time her tube’s blocked so we have to clear it, and she’ll fight you, It’s not easy to do, but the NDIS don’t know that aspect, they don’t see it.”
On top of that, Georgie has been forced to crowd-source additional funding for therapeutic aids that the NDIS does not consider essential to Poppie’s care.
In one case, the NDIS funded a bed for Poppie that can be raised, but would not fund bed rails.
“We had a year long period of intense negotiation with the NDIS over bed-rails.
“They wouldn’t fund rails because it’s considered restrictive practice and a normal child of Poppie’s age should be transitioning into a standard bed with standard bed rails.
“But we’re talking about a child who has no depth perception because of her visual issues, vestibular problems because of her ears so her balance is shocking.
“If she was to fall out of bed, she doesn’t make noise when she cries because of the tracheostomy.”
Outside of NDIS funded equipment, Georgie estimates she could spend anywhere up to $10,000 a year on additional therapies and equipment for her daughter.
“The fundraising we do is essential, there’s so much we wouldn’t be able to do without it.
“She’s hands-on needy, she wants to run around and do everything a normal three year old would want to do but her disability isn’t cognitive, it’s entirely physical, so what she wants to do and what she can do are often two different things.”
Poppie’s situation is improving every day, and Georgie said she was looking forward to her first day of three-year-old Kindy.
If you want to help Poppie, go to www.gofundme.com/poppies-journey or search Poppies Journey With Charge on Facebook.