DIAGNOSED with type 1 diabetes on her fourth birthday, Darch girl Phoebe Marcinkowski is the only student at her school with the disease.
The nine-year-old is also the sole member of her family with the disease and relies on a pump to constantly inject insulin into her body.
Her mother Olivia said the disease, which researchers are trying to find causes of and cures for, meant her daughter did not have a normal childhood.
“There’s nothing normal about it really,” Mrs Marcinkowski said.
“When she goes to birthday parties, she can’t have anything like the cake that normal kids have, all those treats.
“She never sleeps at anyone’s house; there’s not many people that can watch and look after her.”
Mrs Marcinkowski said the reality of the disease hit about nine months after Phoebe’s diagnosis, when she went into a diabetic coma for five hours.
“Her glucose levels just didn’t want to rise; it was really scary,” she said.
“That’s when it hit us that the diabetes is real and how serious it really is.
“We are in charge of her life at the moment (but) it’s really hard as a parent to know what’s best for her.”
As Phoebe gets older and matures, she becomes more independent, but her mother said sending her to school had been challenging because she was the first student at Ashdale Primary with type 1 diabetes.
Mrs Marcinkowski said it was good that the disease wasn’t common in the area, but the lack of awareness also made it harder for her daughter.
Unlike type 2 diabetes, which is progressive and affected by lifestyle factors, type 1 is an auto-immune condition that stops the pancreas from producing insulin.
Phoebe has to wear a pump that injects her with insulin all the time, including while sleeping.
“It’s a horrible disease,” her mother said.
“The only good thing about the disease is you can manage it.”
Phoebe’s father Bart is teaming up with Butler resident Kyle Masterman and other northern suburbs residents to fundraise for the Juvenile Diabetes Research Foundation.
This weekend, they will hold an ’80s themed quiz night in Alexander Heights to help raise money for the ride.
Mr Masterman said he was diagnosed with type 1 diabetes 15 years ago.
“The disease is something that occurs out of no fault of my own,” he said.
“One day my body decided to attack the insulin producing cells in my pancreas.
“This in turn stopped producing insulin, raising my blood sugar to a near fatal level.
“Since then I struggled with the daily burden of everything that comes with living with a disease that requires 24/7 management with medication that can kill me should I get the dosage wrong.”
Mr Masterman said he started doing the JDRF Ride to Cure Diabetes in the Barossa Valley in 2008, and he met the Marcinkowski family three years ago.
“Next year in June, we are completing a 160km road cycle through the hills of Adelaide,” he said.
The Green Team, which also includes Daz Hall, Riana Rose and Duncan Rogers, aims to raise $25,000 for diabetes research projects for the 2016 ride.
To donate, visit Everyday Hero.
JDRF Quiz Night
What: ’80s themed fundraiser
Where: Alexander Heights Community Centre, Linto Way
When: 6.30pm on August 1
Cost: $100 per table of 10
Book: call Olivia on 0410 556 935 or email email@example.com