Family of Audrey Wallace struggles for support while daughter in palliative care

Audrey Wallace lives with treatment-resistant epilepsy and is in palliative care. (ABC Gold Coast: Jessica Lamb)

Audrey Wallace loves unicorns almost as much as she adores her little sister Amari.

But for the past six weeks, parents Justin and Ashlee Wallace have been adjusting to the news that their "cheeky" six-year-old is in palliative care.

"She's the bravest and the strongest, she's got the biggest heart," Mr Wallace said.

"We just want to live life with her, all our ambitions and all things we want to do in life — we want to do them while we still have her. "

Audrey, 6, lives with treatment-resistant epilepsy.

Her condition deteriorated rapidly last month after a bout of pneumonia.

Before that, she could walk and talk but has since needed a wheelchair, suffered constant seizures and can no longer swallow food.

Doctors told her family the condition was life-limiting but couldn't pinpoint a timeline.

Mr Wallace said his family wanted happy memories to dominate their remaining time with Audrey but instead the Gold Coast couple felt "stuck between a rock and a hard place" as they waited for bureaucracy to keep up with their daughter's changing condition.

"This has just been hell, it has consumed our whole lives," Mr Wallace said.

Waitlist with thousands of others

Audrey was diagnosed with epilepsy after her first seizure in May 2022.

The seizures eventually affected the mobility on her left side before her recent deterioration.

Audrey has been housebound in her family's three-bedroom duplex rental since leaving the hospital on June 14.

Mrs Wallace said Audrey needed to be carried to her bedroom and bathroom as the hallway was too narrow for the wheelchair to fit.

"We're wanting something that's more open plan and more fit for Audrey for her disabilities while she's still here … so she's as comfortable as she can be," Mrs Wallace said.

"But at the moment, we have no money in our bank to be able to move, let alone to pay for a house that's more expensive than what we're paying."

The family is on Queensland's public housing waitlist, along with 43,000 people in the midst of a housing crisis.

A Department of Housing, Local Government, Planning and Public Works spokesperson said the department was working with the Wallace family regarding their housing needs.

Mrs Wallace said the department had offered to cover their $30-a-week rental increase from July 1.

Hamstrung without transport

Mr and Mrs Wallace said their greatest wish was to host a unicorn fairy party in a park for their little girl or take her to the zoo, spending the time they had left making her smile.

But they said her sudden downturn in her health had complicated those tasks.

"Audrey has been deemed unsafe to travel in a car normally and we don't have a wheelchair-friendly vehicle," Mrs Wallace said.

"We would love to be able to buy a car that can take her wheelchair but unfortunately money doesn't grow on trees."

Mrs Wallace said the only way for Audrey to travel safely was in a maxi-taxi at the family's expense.

"We have some money left in the [National Disability Insurance Scheme] package under the categories for consumables, carers and therapies but none for transport," she said.

While in hospital earlier this month, Audrey’s care team began the process of applying to the NDIS for a review of Audrey's funding.

But her parents said they were frustrated by how long the process had taken.

A National Disability Insurance Agency spokesperson said the family could still access Audrey's funding package worth more than $200,000 while they awaited the review.

But Mrs Wallace said none could be used for transport.

'Reactive' bureaucracy

Audrey was hospitalised in the Queensland Children's Hospital on May 9.

"As soon as it became apparent that Audrey's care needs had changed, her multidisciplinary care team worked with her parents to quickly reassess her needs and prepare the paperwork required for a review of her existing NDIS supports," a hospital spokesperson said.

The NDIA was informed about a month later on June 6, but did not receive the required medical information from Queensland Health until June 17, a spokesperson said.

"The NDIA has set up a priority planning meeting for next week," the spokesperson said in a statement.

"The agency will ensure that following the meeting, Audrey's plan is updated to ensure she has the right disability-related supports in place as soon as possible."

The review was set for June 24, but Mr Wallace said with his daughter in palliative care, the time it had taken was not good enough.

"We feel everyone is reactive instead of proactive ... and we feel that this has taken a lot of time away from Audrey and time is something we don't have," Mr Wallace said.

More to be done

Epilepsy Queensland chief executive Chris Dougherty said Audrey's case was indicative of a larger system failure.

"Children living with epilepsy, particularly catastrophic or drug-resistant forms of epilepsy, like Audrey have really painful lives," Mr Dougherty said.

"As we get into this stage of Audrey's process, moving into palliative care, we need to do more … the system needs to be more coordinated, and it needs to function better together to support people that are living this experience."

Mr Dougherty said Audrey's case was a symptom of a lack of best-practice pathways.

"If the systems were designed to function better together, rather than being disconnected or disjointed, we would see less of these types of things happen," he said.

"Some of the reality is these conditions do regress rapidly and there isn't a lot of opportunity to move things really quickly.

"But the fact that someone like Audrey has been in hospital for six weeks and over that time deteriorated rapidly would suggest that there's a problem or a disconnect between the various systems at the state and the federal level to ensure people are supported and their quality of life is protected as best as we possibly can."