WHEN Malcolm Turnbull shakes seven-year-old Benjamin Mason's hand, he'll be clasping tiny fingers that have been pricked 10,000 times in the past three years.

Benjamin and his brother James, 5, from Allora have to pierce their fingers up to 14 times a day to check blood sugar levels that can change rapidly at any time.

They were diagnosed within months of each other and this is all part of the gruelling daily routine that comes with type 1 diabetes.

Type 1 diabetes is an incurable auto-immune disease that affects 5.6 per cent of people in the Southern Downs.

It inhibits the body's ability to produce the insulin that regulates blood sugar levels.

Horrifying and rapid, the onset of Benjamin's illness came at the beginning of 2015.

"We were extremely lucky he didn't end up in intensive care," mother Hayley said.

 

Living with type 1 diabetes requires close monitoring and management.
Living with type 1 diabetes requires close monitoring and management. Marian Faa

Over the space of a few days, Benjamin started drinking excessive amounts of water and wetting the bed overnight.

"It just escalated and the drinking was phenomenal - he was just constantly drinking," Hayley said.

When he was taken to hospital, Benjamin's blood sugar levels were more than three times the normal limit.

But 11 months later, just as the young Allora family were getting used to managing one son's illness, their other little boy started to deteriorate.

"We started to see the signs and thought surely not, but we decided to do a test and his blood sugar was through the roof," father Mark said.

Since their diagnoses, managing the boys' illness has been a non-stop commitment for the whole family.

From getting up in the middle of the night to interrupting classes and lunch breaks at Allora State School, constant monitoring is crucial to ensuring blood sugar levels don't spiral out of control.

 

Benjamin Mason has to test his blood sugar levels up to 14 times per day.
Benjamin Mason has to test his blood sugar levels up to 14 times per day. Marian Faa

If they do, the damage could send Benjamin or James into a coma and put them at long-term risk of amputation and nerve damage.

Birthday parties, holidays and sporting matches require careful planning.

"It is exhausting," Hayley said. "So many things can influence it like their food, exercise, sleep, sickness and even their emotional welfare."

Each brother has an insulin pump permanently hooked up to his body through a cannula that must be changed every three days.

But hope for a cure and better management therapies lies in research that the young brothers are asking politicians to support when they join 100 other children with type 1 diabetes at Parliament House in Canberra on August 22 and 23.

The children and their families will urge both sides of government to allocate $50 million to fund the Juvenile Diabetes Research Foundation to research improved treatment and a cure for type 1 diabetes.

 

MAJOR DISRUPTION: Benjamin and James Mason have to keep a close eye on their blood sugar levels because they both live with type 1 diabetes.
MAJOR DISRUPTION: Benjamin and James Mason have to keep a close eye on their blood sugar levels because they both live with type 1 diabetes. Marian Faa

Benjamin said he hoped to meet the Prime Minister and was looking forward to getting to know other children with type 1 diabetes.

"I'm going to give the Prime Minister a fist bump for my principal," he said.

What is type 1 diabetes?

Type 1 diabetes affects over 120,000 people in Australia alone.

The peak age of diagnosis is 10-14 years and many children end up in intensive care at the onset of the disease.

Symptoms can include excessive thirst and urination, unexplained weight loss, weakness and fatigue and blurred vision.

The cause of type 1 diabetes is unknown, but it has a strong family link and cannot be prevented. It has nothing to do with lifestyle, although maintaining a healthy lifestyle is very important in helping to manage type 1 diabetes.

At this stage nothing can be done to prevent or cure type 1 diabetes.



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