It has been 36 years since the Northern Territory resident lost her daughter Glennis to the disease in a traumatic incident at Christmas and every day since, the mum has struggled to speak about what happened.

But after years of silence, Kerrie has decided to share Glennis’s story to create a “legacy” for other people with the condition.

“If I can talk about what happened then she’s not erased,” she said.

“Glennis becomes one of those important people in the Type 1 community which pushes us forward.

“When it happened I shut down. I’ve got 10 years there I can’t remember.”

Through sharing her daughter’s story and her own experience of living with Type 1 diabetes, Kerrie hopes to raise awareness for the disease and encourage government funding for life-changing treatment.

The day Kerrie’s world fell apart

When Glennis was 13 years old, Kerrie and her husband were in the midst of divorce proceedings in regional Victoria.

Through their arrangement during the festive period in 1989, Kerrie said they would take it in turns to have their four girls for a few days.

But during a stay at their dad’s shortly after Christmas, Glennis’s high blood glucose levels skyrocketed.

Kerrie remembers getting a call from one of her daughters when their dad was out at work to tell her Glennis had started vomiting and quickly called an ambulance who tried to get in contact with Kerrie’s former partner.

Their dad came home to find an unresponsive Glennis and quickly gave her an injection of insulin and glucose syrup before bundling her into the car to go to the maternity hospital.

On the way there, Glennis suffered a traumatic cardiac arrest before she was resuscitated in a hospital micro unit.

By the time she was transferred to the children’s hospital, Glennis was declared brain dead.

“They said there’s been a major trauma … we’re going to remove the life support systems,” said Kerrie.

“I remember being angry at them. I said ‘Don’t stand there waffling telling me what the problem is, if she’s going to die I need to be with her’.”

At this point in telling the story, Kerrie is audibly sobbing.

“Sorry,” she said taking a few deep breaths before plunging into the moment that has remained achingly raw even after 36 years.

“I went back into the room and they removed her life support,” she said.

“I stayed with her and held her. At that point your world falls apart.”

Life with Type 1 diabetes: ‘My biggest fear was not waking up’

The next decade was a blur for Kerrie who said she struggled to remember much of anything for the 10 years after her daughter’s funeral.

But it was not the end of her experience with diabetes.

Six months after a bad bout of bronchitis in 2011, Kerrie lost 10kg in 11 days.

With a strong family history of the disease and knowing her daughter’s traumatic death could be a trigger, Kerrie quickly got her blood tested and was taken straight to hospital when her blood glucose levels came back at 32mg/dL.

“I had some massive hypos during that learning period,” Kerrie said.

Even when Kerrie’s levels are well-managed she said living with the diagnosis over the past 13 years had been a constant rollercoaster.

Her days are filled with continuous self-assessment of her blood levels, activity and never going anywhere without a bag of lollies and insulin shot while her nights are filled with fears of dying in her sleep.

“That was my biggest fear, just not waking up,” Kerrie said.

“Across the Type 1 community that would probably be most of us. The fear that I’m not going to wake up, I’m just going to fade away.”

However, her quality of life changed dramatically in April this year when she started using a newly launched automated insulin delivery system, Omnipod 5.

“The results have been incredible,” Kerrie said.

“I sleep, I don’t have those lows anymore; the pump controls that.

“It’s taken a lot of the mental load away.”

Forced to give up their NT retirement dream

But unlike continuous glucose monitors, these insulin pumps remain mainly self-funded.

Patients with the Omnipod 5 model can go on a pay-as-you-go model, starting around $185 per month plus a $24 NDSS co-payment for healthcare card holders instead of paying the upfront cost starting from $8500 (with a partial subsidy).

While the pay-as-you-go option is more affordable, for a lot of Australians the cost still means the treatment remains out of reach.

For Kerrie, who moved to Batchelor, about 100km south of Darwin, with her husband from Victoria to live out their retirement, it means downsizing and giving up their Northern Territory dream.

With high energy and water bills and a lack of concession discounts on top of her monthly health bill for the pump, the pensioners are struggling to afford their retirement.

“It all came down to what’s more important, the Territory lifestyle or having an insulin pump,” she said.

“My husband said ‘no the pump stays, the house goes’.”

For World Diabetes Day on November 14, the diabetes advocate has joined calls for more education on recognising the signs of Type 1 diabetes and reform to Australia’s insulin pump funding model.

“I often think about the life Glennis could have had,” she said.

“The AID system has changed everything, my freedom, my energy, my peace of mind. No one should have to lose a child because they can’t afford access.”

Petition launched for accessible treatment for ‘relentless’ disease

In 2022, diabetes was one of the 10 leading causes of death in Australia and contributed to 21,900 deaths.

Professor David O’Neal, a leading endocrinologist from St Vincent’s Hospital, said the need for universal access to these systems which support better management and relieve mental strain is clear.

“Living with Type 1 diabetes is relentless,” he said.

“From the moment of diagnosis, people living with diabetes and families make dozens of daily decisions, calculating doses, monitoring glucose, and managing diet, exercise and sleep with little room for error.

“A sense of burnout made worse by financial pressure.

“The government has already recognised continuous glucose monitoring as a public-health necessity. Automated insulin delivery technology is the next frontier.

“We can’t afford to wait another decade.”

To find out more or to sign the petition to support universal access to AID technology in Australia, click here.