The nightmare began in October last year.
She was not hit by a car, attacked in a street or involved in an accident. She was fine one day and the next day she wasn’t. She was vomiting, she couldn’t speak and then started seizing.
She had contracted encephalitis which is an inflammation of the brain. How and why she contracted it remains unknown: it was either caused by a virus, or her own immune system.
She was admitted to intensive care and had her skull removed to allow her brain space to expand.
In the days that followed Rikki’s diagnosis and hospital admission, her mother, Lisa Bryant, and their loved ones were forced to confront a gut-wrenching, shock-inducing, heart-rending fact that no parent should ever face: Rikki might die.
For many weeks, and even months, through myriad ups and down, dying appeared a distinct and brutal possibility. She kept fighting to live, despite constant seizures and many drug reactions and hospital acquired infections.
Mercifully, and against the odds, she survived.
Less mercifully, Rikki has sustained considerable brain damage from the autoimmune virus.
The day before Rikki became unwell, she gave a presentation at uni. Four months on, she is unable to dress herself.
Encephalitis has irrevocably changed her life. To say it has also changed her mother’s life is an understatement of epic proportions.
Lisa has spent her every waking minute since October last year caring for Rikki. Fighting for Rikki. Praying for Rikki. Crying for Rikki.
(And in the past five months sleeping minutes for Lisa have been wretchedly scarce. Fighting for Rikki has been an around the clock proposition.)
She spent evening upon evening, from dawn til dusk and the hours in between, at Rikki’s bedside. She’s spent her days listening to the medical team try to explain the often inexplicable.
In many respects Rikki was lucky. The care she received at one of Australia’s public hospitals was mind-blowing. A team of specialists – from doctors to allied health therapists to nurses – worked tirelessly around the clock to keep Rikki alive and comfortable.
Their efforts were fruitful. A little over a month ago, undoubtedly because of the care she received, Rikki was discharged from hospital.
But the nightmare wasn’t – and isn’t – over. Her body is better, but her brain is not.
After receiving incredibly intense and comprehensive care in hospital, Rikki has now effectively been abandoned.
Physically Rikki is better and she has a competent carer in her mother so, it seems, from the health system’s perspective, that is the end of the line for Rikki’s access to therapy.
But for Rikki herself, and her mother Lisa, this is the beginning, not the end.
Rikki needs care 24/7 so Lisa can’t work. She hasn’t worked since this nightmare began five months ago. Previously Lisa had worked as a self-employed consultant in the early childhood education sector, supporting her family as a single mother for the past 15 years.
For Rikki to have the best shot at regaining some of the cognitive damage her brain has endured, she needs intensive therapy. A minimum of 5 hours a day, over a 6 month period is the gold standard.
But she is barely entitled to any therapy – let alone that level of therapy.
Her mother Lisa says, “Yes it would be expensive. A lot of money for one person. But less than a 20th of what has been spent on saving her life. Why is the money there to save her life, but not to help to return her to functionality?”
The answer in Rikki’s case is cruelly fickly.
Brain injuries are relatively common in Australia and specialist treatment is available as a result. But for a variety of inexplicable factors Rikki isn’t entitled to access it.
She was rejected from one rehab program because her injury was acquired through illness, not an attack or accident. The fact she’s young and hasn’t suffered a stroke also places her outside the scope of current funding options.
She falls through the cracks. She’s not entitled to a disability pension and she won’t have access to the NDIS until June 2018. Medicare doesn’t cover access to speech therapists or occupational therapists or physiotherapists. Lisa isn’t yet entitled to any respite care.
Lisa was told to reach out to the not for profit sector for financial help. But the not for profit sector is in disarray because funding is uncertain and the demand is sky high.
The medical system often fails those who need it most. Watch a young girl who suffered terrible brain damage while in a dentist’s office.
Lisa’s days are currently spent making phone call after phone call to disability and hospital services, while caring for her daughter, while somehow carrying the physical and emotional toll of nursing her 23 year old daughter back from the brink of death, to the brink of living with brain damage.
She cries a lot.
“I cry because it shouldn’t be this hard. I shouldn’t have to fight this hard to get her even basic therapy, let alone the intensive therapy she needs. Healing my daughter doesn’t finish with physical health. It finishes when that gorgeous brain of hers is functioning as well as it can be.”
Lisa has started a Go Fund Me page to help raise money to give Rikki the therapy she needs.