Danielle and Boyd live with their two little girls in a remote mining town. This is where both of their families are, where they went to school, where they met and married. They love where they live and their community. But when Augie, 7, was diagnosed with type 1 diabetes in October 2019, they felt a long way away from diabetes treatment and worried that Augie would feel she was the only one in the world with diabetes. That’s where DiaBuddies has been able to help.
“Every time I talk about it, I cry,” says Danielle, when she tries to explain Augie’s diagnosis with type 1 diabetes. “I can’t help it.”
The early warning signs of type 1 diabetes
Life was busy and good when their little daughter, nicknamed “Skinny Rabbit” because of her lean frame, started being lethargic, emotional, and urinating through the night.
“Augie woke up one night and came into me. ‘Mama, I’ve sweated through my pyjamas.’ We were all so tired because of her constantly going to the toilet at night that I told her to go and change them and go back to bed,” Danielle said.
“In the morning when I got up her pants were soaked with urine and I booked her into the doctor straight away. I was worried she had a urinary tract or bad kidney infection.”
“She’d also lost quite a bit of weight. She was skinny anyway so I hadn’t put all the symptoms together.”
Danielle couldn’t get Augie into her usual doctor for a couple of weeks so saw a different GP at a new practice.
“Yep, she’s got a urinary tract infection,” he said, and prescribed Augie antibiotics.
The drugs had no effect, and Danielle was alarmed when she got a letter a week later saying something had come up in Augie’s pathology results and she needed to come back into the practice.
There were no appointments available for two weeks.
Getting a diagnosis
That night, Danielle enlisted the help of Dr Google. She turned to her husband and said “I think Augie’s got diabetes”.
Danielle was right, and after Danielle begged for an urgent appointment with her usual GP practice, Augie was admitted the next day to the local hospital’s small paediatric ward until the Royal Flying Doctor Service took them to the nearest capital city.
Learning to live with type 1 diabetes
Life with diabetes had begun for Augie, and her family.
Despite overcoming insulin dosing, carb counting, meters, pumps, continuous glucose monitoring, set changes (when the sensor and cannula have to be changed), as well as hypos (dangerously low blood glucose levels) and hypers (very high blood glucose levels), there were more challenges ahead for the young family.
In 2020, COVID-19 closed state borders and stopped the family from attending diabetes appointments in the nearest (interstate) big city. There are no diabetes services in their town.
“Unless you’re an urgent medical case, there were no exemptions to the border closure. There were no exemptions for people with chronic conditions like diabetes,” Danielle said.
Danielle says in some ways, COVID-19 has worked in their favour.
“Prior to COVID-19, telehealth wasn’t an option for us. They talked about it, but it wasn’t acted on until isolation,” she said. “Now we’re doing all of Augie’s appointments with the Endocrinologist and Diabetes Educator over the phone.”
But Augie is facing a bigger battle than blood glucose levels. She doesn’t feel the same as everyone else anymore.
“Augie says things like ‘I’m the only different one; I’m the only weird one’.”
“We try not to let her wallow in it, but it hurts. I think it was yesterday she said: ‘I’m the only one not normal in the family’.”
Her mother asked her: “What’s normal?”
“We’ve all got something that’s different,” Danielle told her daughter.
“None of us are exactly the same, we’re all different. There is no such thing as normal.”
“You’re just extra special.” Danielle cries as she recounts her words.
DiaBuddies Days connecting kids and families with type 1 diabetes
Thanks to the help of wonderful donors, Diabetes NSW & ACT started DiaBuddies Days.
These events provide opportunities to connect children living with type 1 diabetes, parents and health professionals like Credentialled Diabetes Educators and dietitians.
Being able to join DiaBuddies Days, now being delivered over the internet instead of in groups, is easing this family’s journey.
The online events, which include events for parents, carers and the children too, are designed to create an engaged, positive, online community for families that nurtures connections and confidence.
Events for children incorporate games and some practical activities to help them understand their diabetes, have fun and meet other children with type 1 diabetes, just like them.
Families have an opportunity to connect with each other through the activities, as well as share their tips and advice.
Making new friends
Augie has already met a little girl of the same age during one of the meetings, and they’ve shown each other their dogs and diabetes teddy bears complete with pumps. The girls’ mothers have organised to get the children together again over the internet, despite living hours away from each other.
Danielle said the beauty of DiaBuddies is that you don’t need to explain diabetes or what you are going through.
“It’s just being able to hear other people’s stories and understand what they’re going through.”
“People have got similar diagnosis stories, but their own versions, and some are a lot worse than ours so it puts things into perspective.”
“It’s the relief of being able to connect with people who understand that you don’t get any sleep, that it’s literally like having a newborn. You can say that to other people but until you’ve lived it, you don’t really know.”
“It’s understanding what a Dexcom set change means for a kid; being able to ask questions, troubleshoot things with people who have been through the same thing. For example, when we went on to a pump, being able to reach out to people and say, are there any tips or tricks?”
“That connection with people is so important, especially for us in a regional area where there isn’t a diabetes support network.”
DiaBuddies is our new support network
“DiaBuddies is now our support network. It’s where we can see other people in the same situation.”
“Even if they are thousands and thousands of kilometres away, you can still feel connected.”
Danielle says she wants to advocate for people in the diabetes community for improvements such as universal access to the latest continuous glucose monitoring equipment for all people with diabetes.
“I want her to see me advocate for her,” Danielle said. “I’m so proud of her. In the future, I want her to advocate for herself as well.”
“I want Augie to be forward–facing. I don’t want her to hide her condition. I never want her to feel ashamed of having diabetes.”