“As a parent, seeing your child so sick they end up in intensive care is very traumatic.”
Sean, a Sydney parent whose twin daughters Allie and Ayva were diagnosed with type 1 diabetes (T1D) at one and a half years old, reflects on his daughters' distressing experiences in hospital.
Ground-breaking research is crucial to ensuring that children like Allie and Ayva can lead fulfilling lives and, in future, preventing other children from developing T1D in the first place.
Read on to find out more about the family's experience with T1D and the researchers helping secure the twins a brighter future.
A family's story
Sean and his wife Lauren are doting and devoted parents who adore their twin girls. So, you can imagine the worry they felt when Allie started showing symptoms of T1D.
“She got very, very sick,” Lauren remembers. “She was throwing up a lot, sweating, and had a high temperature. She was gasping for air.”
Deeply concerned, Lauren and Sean took Allie to the hospital. After a few tests, they were sent home. However, as Allie’s condition continued to deteriorate, they returned the following day.
“The second time we went to the hospital, they did a blood test,” Lauren says. “Within a few minutes, there were about 20 doctors and nurses around us discussing diabetes. It was a huge shock. I knew nothing about T1D. No one I know has it."
Allie spent a week in the hospital after her diagnosis, a stressful and scary time for her parents.
“She was only one and a half, and she was being poked and prodded with needles. It was scary and unsettling to watch as a parent,” recalls Sean.
Then, just five weeks after Allie's diagnosis, Lauren noticed twin Ayva displaying similar symptoms.
“She was drinking and going to the toilet a lot, and she had sweats just like Allie had. We took her straight away for tests, and she was quickly diagnosed. Our world was turned upside down for the second time in a matter of weeks.”
Learning to live with type 1 diabetes
Lauren and Sean suddenly found themselves with not one but two toddlers with T1D. They faced a terrifying and steep learning curve as they adapted to their new life with an unfamiliar and chronic condition.
“It was a lot of work learning how to manage it,” Lauren says. “We knew that if we didn’t get everything absolutely right, the girls could get really sick again. Or worse. Getting them used to needles was the hardest part. They’re horrible for little kids.”
Sean agrees that learning to live with T1D was a huge challenge for the whole family.
“There was so much to learn about how to monitor their blood sugar levels and give them the right amount of insulin at the right time. We still worry about that stuff every day.
“JDRF was an amazing support. They gave us all the information we needed, and they checked in with us regularly to make sure we were coping okay.”
For Allie and Ayva, being diagnosed at such a young age means facing the reality of managing T1D for the rest of their lives. It's a future Sean and Lauren would do anything to change, underscoring the critical need for ongoing research and funding in this area.
Australian researchers are working to improve the lives of people like twins Allie and Ayva
Associate Professor John Wentworth is working alongside other researchers at the Australasian Type 1 Diabetes Immunotherapy Collaborative (ATIC) to test and develop innovative ways to diagnose and treat, and one day, prevent and cure T1D.
“Diabetes is a serious, lifelong condition. There is an urgent need to find better ways to treat it,” A/Prof Wentworth explains.
“We’ve had insulin for a century. It’s not without risk and it doesn’t solve the problem. We need to do better. Immunotherapy is one clear way we can."
“The overall goal of our research is to work out how to stop the immune system from attacking the pancreas so we can prevent and ultimately eradicate T1D."
"Markers in the blood that signal T1D typically emerge in children around age four or five, with diagnosis peaking around 10 or 12 years old. This creates a crucial five-year window for early detection and intervention. That work is being done through clinical trials, but before long we hope it will be part of routine care."
"Our work is developing safe and effective treatments that turn off the immune attack so that kids like Allie and Ayva don’t get T1D."
How the research works
> Step One: Screening
The first step is detecting T1D early.
A hallmark of the early stages of the condition is the presence of 'autoantibodies', markers that can be easily detected in the blood and are a sign that the immune system has already begun attacking the beta cell of the pancreas. Screening for T1D involves detecting these autoantibodies in a blood spot or traditional blood sample.
You can read more about the JDRF-funded National Screening Pilot here.
> Step One: Trialling
A/Prof Wentworth says: “The second component of our research is trialling a range of immunotherapy treatments that have the potential to stop a T1D patient’s immune system from attacking the pancreas."
“We’ve seen especially promising results from a drug called baricitinib, which is typically used to treat rheumatoid arthritis. In the early stages of trials, it showed very good effectiveness in protecting the pancreas and halting the loss of insulin production.”
A/Prof Wentworth's hopes for the future
A/Prof Wentworth says these discoveries could be life-changing for people in the future.
“If we can diagnose and treat T1D sooner, we could delay, halt, and even prevent the symptoms altogether. That would remove the need for regular blood sugar monitoring and insulin and give much-needed peace of mind to people and their families.”
A/Prof Wentworth’s research is providing hope for a T1D cure. But there’s still much work to be done if it’s going to deliver on that promise.
“Drugs and therapies like the ones we’re investigating must go through rigorous testing to demonstrate they are safe, effective, and ready to be used in a clinical setting,” he says. “Putting a drug through the clinical trial process is expensive and time-consuming.
“JDRF’s support is absolutely vital to providing the funding needed to conduct those clinical trials in Australia. By allowing us to continue this research here at home, that support ensures people like Allie and Ayva can enjoy the benefits of the discoveries we make.”
A brighter future for Allie and Ayva
Lauren has high hopes for what the future will look like for her girls.
“I just don’t want life to be a constant struggle for them. I want them to be free to do whatever they want, and I want them to feel included. I don’t want their condition to hold them back, and I really hope that researchers can find a cure.”
Sean too understands that research is critical to shaping a brighter future for his daughters.
“My girls mean the world to me. I’m looking forward to watching them grow up to be smart and beautiful young women. I know they’re facing a tough road ahead without a cure. I’ll do anything I can to support research can find that cure and improve life for Allie and Ayva.”
How you can help
The very best way you can help ease the burden of T1D on people like Allie and Ayva – and give them hope for a cure – is to donate to JDRF Australia, so we can continue supporting research like A/Prof Wentworth’s.
By contributing to initiatives like Giving Day on 30 May, you help us put new therapies in the hands of the Australian T1D community faster by funding essential clinical trial infrastructure.
Donate to Giving Day and double your impact here.
Double your impact now!
Australia is at a turning point for type 1 diabetes (T1D) research. With new treatment options on the horizon and screening initiatives scaling faster than ever before, there’s never been a more exciting time to support local breakthroughs.
When you donate now, your investment in a world without T1D doubles – helping make the next big T1D breakthroughs a reality.
