If you have type 1 diabetes, you’re at risk of Dead in Bed syndrome, a phenomenon that’s linked to ineffective blood sugar regulation during sleep. The pump delivers a continuous dose of rapid-acting insulin throughout the day and night.

Mia’s journey with type 1 diabetes began when she was a small child. 

“Mia would just drop to the ground randomly, and be in agony with stomach pains,” her mum Cassie told Kidspot. 

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It took years for Mia to get a diagnosis.

Mia’s doctor continually put it down to stomach bugs.

“Just give her a bit of paracetamol and she’ll be fine,” he’d say. But Cassie wasn’t convinced.

“One day I thought, stuff this, I’m going to start a food diary, and write down when she gets these belly aches,” says Cassie. The doctor still put it down to stomach bugs.

When Mia didn’t have a belly ache, she was a happy, healthy little girl. Cassie switched GP’s and Mia was sent for a full workup of blood tests. The doctor thought it may have been food allergies. Mia was losing weight at an alarming rate.

“I remember Australia Day, a few years ago, my dad turned to me and said, Jesus Cassie, little Mia is getting so skinny.”

But Mia had a huge appetite. That day she ate four sausages on bread for lunch and lots of icy poles.

Cassie raced Mia in to see the doctor the next day. The doctor took one look at Mia and the food diary, and said: “Mia I’m just going to give you a little prick on your finger, it will sting a bit.”

What the doctor said next sent chills down Cassie’s spine.

“You need to get Mia to the hospital right now!”

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“I wasn’t leaving without an answer”

Mia’s sugar count was over 30 – it should sit between four and eight. She could have slipped into a coma overnight or even died.

Cassie was so angry that she could have lost her little girl.

“I was done. I went into the hospital with guns blazing and I wasn’t leaving without an answer,” she says.

Mia was diagnosed with diabetes type 1 straight away.

Mia adapted quite quickly to her diagnosis.

“I think I had a lot more tears than Mia, it hit me quite hard, but she was a little trouper,” says Cassie.

Mia was put in ICU for 24 hours on a drip and instantly she felt so much better.

Mia had to undergo two weeks of testing, Cassie and husband Mick had to learn how to count carbs, do finger pricks and administer insulin.

For Cassie it was a matter of understanding what the treatment would be, and what their new normal would look like.

“That was one of the hardest things for me to get my head around, waking up my child at 2.00am in the early hours of the morning to check her levels, and then feeding her jelly beans if her sugar was low,” explains Cassie.

At home, Mia has a constant glucose monitoring (CGM) patch on her arm and it sends her numbers to Cassie and Mick’s phone. At school, she still has to have finger pricks throughout the day.

Mia and her family spent the next two years adjusting to life with type 1 diabetes. At her school, Cassie and her mum spent hours at the school with Mia, the staff weren’t able to cope with Mia’s treatment.

It’s a constant battle, Mia can’t attend birthday parties and social gatherings, unless Cassie knows the parents well.

“It’s a real struggle to keep her safe,” says Cassie. “Mia gets very anxious, and so do I when I walk out and leave her at a friend’s place.”

RELATED: The link between body weight and diabetes

Things can go very wrong, very quickly for Mia

There was an incident where Mia called her mum in a panic. Left alone in the classroom with blurred vision, she felt unwell, she had dangerously low sugar levels.

“Mia was in a hypo,” says Cassie. “She could have slipped into a coma and been unresponsive.”

On her ninth birthday, Mia got really sick. She was vomiting and wouldn’t eat or drink. Her sugar levels were too low, she had a bad virus and ended up in hospital.

Mia desperately needed an insulin pump, to monitor and regulate her levels 24/7.

Three months after anxiously waiting for the potentially life-saving pump, Mia has received her pump through the Danii foundation, but still can’t use it.

She now has to wait for a bed at the hospital for the night, for overnight pump monitoring.

So far, it’s been a nail-biting two-month wait.

With a pump, Mia can go on playdates again. And Cassie says she’ll be much safer and feel more comfortable at school.

“I was over the moon when we were given the pump, it will be life-changing,” says Cassie.

“There were tears of joy, we can’t wait to get it happening so our little girl will be safe.”

The DANII Foundation was established in honour of Daniella Meads Barlow, who tragically died from Dead In Bed Syndrome aged 17.

To help others like Mia access a life-saving insulin pump, donate at danii.org.au/donate/. DANII Foundation aims to make affordable, life-saving technology a reality for people living with type one diabetes.

Originally published as ‘We need over $800K for a device that will save my daughter’s life’