Life with type 1 diabetes
In the blink of an eye April could have a low. Her blood sugar levels could drop so dramatically that she could slip into a coma. If April doesn't eat foods with the right amount of insulin, she could have a high. Her blood sugar levels could rise so significantly that it causes damage to her organs. This is life with type 1 diabetes.
For more than 1000 children and families across Sydney Children's Hospitals Network this is the reality.
Diabetes is the fastest growing chronic condition in Australia with one person diagnosed every five minutes. Of these cases, type 1 diabetes represents around 10 per cent and is one of the most common chronic childhood conditions. The condition occurs when the pancreas cannot produce insulin which can lead to being excessively thirsty, fatigued, blurred vision, mood swings and headaches.
It was these symptoms that led to three-year-old April's diagnosis earlier this year.
"We noticed that April was getting really thirsty and was needing to go to the toilet a lot. I knew these were symptoms of diabetes because I also live with the condition, and we took her straight to the GP," dad, Rodney said.
Tests showed that April's blood glucose and ketones levels were dangerously high and she was referred immediately to hospital.
For April's parents, Danni and Rodney, confirmation of her diagnosis was the hardest thing to deal with.
"I remember thinking, 'how am I going to deal with this?" Rodney said.
"It's okay if you're an adult living with the condition because you can manage things yourself but for a toddler, they rely on you for everything. Their life is in your hands."
Type 1 diabetes means that April's blood glucose levels could be easily affected by things like food, exercise, hormones, illness and emotions. Given this, Danni and Rodney must vigilantly monitor April's blood glucose levels to ensure they are just right, which is done through finger prick testing.
"The aim of the game is to keep her sugar levels right."
"We inject April with insulin at breakfast, lunch and dinner as well as before she goes to bed. We also need to calculate the sugar and carbohydrates she's eating to make sure we give her the right amount of insulin to balance her levels."
In April's household, insulin is more commonly known as her special 'fairy juice' and April knows that this keeps her healthy. When at home, high sugar and high carbohydrate foods are also kept out of reach and April has been taught that these foods are her 'hypo foods' for when she has a 'low'.
For children like April, it is vital these foods, like lollies and juice, are always available, particularly when out and about, as they can be lifesaving when their blood sugar levels drop dangerously low.
"Having a toddler with diabetes is hard because you can't control what they want to eat or when they want to eat it and it's hard on April too because there is so much she's not use to."
Training and education through the Hospital has helped April's parents adjust to life with type 1 diabetes and has given them both the confidence and expertise to manage her condition. They know diabetes likes a routine and they have found that rhythm for April but it isn't easy. This World Diabetes Day, April's parents want raise awareness about the condition and the need for research to find a cure.
"People know of diabetes, but they don't know what it is," Rodney said.
"Research to find out why kids get diabetes and how to prevent it is so important."
The Network is currently participating in a number of research projects, alongside research partners, to investigate causes, treatments, preventions and cures for type 1 diabetes including:
- CORD study - investigating the potential of cord blood to prevent or delay the onset of type 1 diabetes in high-risk children using cord blood.
- ENDIA Study - The Environmental Determinants of Islet Autoimmunity (ENDIA) Study is finding out what causes type 1 diabetes so new ways can be found to prevent it.
- TrialNet Study - a risk screening for relatives of people with type 1 diabetes and innovative clinical studies to preserve insulin production.
- EXTEND Study - The aim of the study is to test whether a therapy called tocilizumab (Actemra®) can stop the immune system from attacking these remaining beta cells and possibly extend the ability to naturally produce insulin.
"If we can stop diabetes from happening, that's the ultimate miracle," Rodney said.