22.

Every parent of a child with Type 1 diabetes lives with an all-consuming fear.

It’s called ‘Dead-In-Bed Syndrome’, a term used to describe the sudden, unexplained death of a young person who has Type 1 diabetes.

“That is absolutely my greatest fear. It’s losing him,” says Steph.

Steph is Frankie’s mother. He is a typical three-year-old boy who is living life at 100kph, and embracing every day as an opportunity to move, talk, explore, and play. He is also a Type 1 diabetic.

Frankie is one of 2,500 New Zealand children under the age of 18 who are living with Type 1, the autoimmune form of diabetes. His pancreas doesn’t make insulin because his immune system mistakenly destroys the cells that produce it. Steph, by default, is both Frankie’s mother and his nurse.

“I think, as a parent of a diabetic child, you are always in a state of trauma and anxiety. If I cry, I am allowing the illness to get to me, and I absolutely won’t cry in front of Frankie.”

Several times a day, Steph monitors Frankie’s blood sugar levels to ensure they remain in a healthy range. If his blood sugars drop too low, Frankie can suffer hypoglycaemia or a ‘hypo’. He can become dizzy, disorientated, and confused, and start to tremble or sweat.

“Sometimes I can get on top of it quickly with carbs, or perhaps a Juice Box or milk.”

If a ‘hypo’ isn’t treated or Steph doesn’t pick up on the signs, Frankie could slip into a diabetic coma. It’s worse at night. If his body goes into a hypoglycemic state and his parents don’t know, Frankie could fall into a coma and never wake up.

“That’s why I say it’s a lived trauma. Every day it’s a juggle. I am constantly monitoring his diet and exercise and trying to make sure I’m getting it right.”

Not surprisingly, parents of a child with Type 1 diabetes live in an exhaustive state of flux. They follow a strict routine of injecting insulin, pricking their child’s finger at least eight times a day to draw blood, and continually monitoring their behaviour for the telltale signs of a ‘hypo’.

“Frankie doesn’t always show symptoms. Sometimes kids go pale or zone out. Sometimes they babble or act as if they’re a little bit drunk. Frankie isn’t that kid. If he’s hypo and I don’t know, the first sign we might get is a seizure.”

In much of the developed world including Australia, the U.K. and Canada, a device called a Continuous Glucose Monitor (CGM) is funded for Type 1 diabetics. The CGM is worn on the arm, and a tiny sensor is inserted into the skin. The child’s blood sugar level is always visible on the screen.

CGM’s are, irrefutably, the single most important tool in the prevention of ‘Dead-In-Bed Syndrome’.

The technology doesn’t come cheap. CGM’s range in price from $2500 to $5000 a year. In New Zealand, they are not publicly funded by our health system.

Pharmac, our drug-buying agency is chronically underfunded, and the Government’s per capita pharmaceutical spend is now the lowest – by a considerable margin – in the developed world.  This is not a country that invests in modern medicines.

The Dexcom CGM has an annual price tag of $5,000 but it includes a software package that is attached to a phone, and it immediately alerts parents if their child’s blood sugar starts to drop below an acceptable level.

“It’s life-saving. Literally. That’s what it does. It saves the lives of Type 1 diabetics.”

The day Frankie was diagnosed with Type 1 diabetes, Steph’s world changed forever. She would take it in turns with her husband, Nick, to get up every 2-3 hours in the night to check Frankie’s blood.  Like every parent with a Type 1 diabetic child, life became a sleepless existence fueled by anxiety, worry and fear.

“You get up in the night and put a needle into your toddler’s finger, and if his blood sugar is low, you have to try and get food into him. It’s so hard having such a young child with this disease. They don’t understand so it’s really tough.”

Last April, a close friend of Steph’s intervened and set up a Givealittle page to raise $5,000 to buy a CGM for Frankie for a year.

“I couldn’t believe it. People were amazing. They raised $5,000 and we got the monitor. It completely changed Frankie’s life and our lives. It has been incredible for our family.”

Steph and Nick now always know if Frankie’s blood sugar is low, and an alarm goes off in the night if Frankie’s levels fall and he’s at risk of a ‘hypo’. They also know if it’s too high which can cause irreversible damage to his organs.

“It means we can finally put Frankie to bed at night and know that he’s safe. I can’t tell you how important that is. He deserves to be safe. He deserves to live.”

In April, the Dexacom subscription runs out and Steph and Nick will have to find another $5,000 from somewhere. They are a young family juggling Frankie and his 18-month-old sister, Freya. Money is not something that comes easily to hand.

“I don’t know what we will do in April, but this is not just about Frankie. This is about every parent with a Type 1 diabetic child. Families shouldn’t have to live in a constant state of anxiety and trauma. The technology is available, and at the very least, shouldn’t the Government be looking at funding CGMs for children?”

It is a difficult disease to manage, and Diabetes New Zealand estimates that those who struggle to manage their blood sugar levels can be hospitalised up to six times a year, often for several weeks at a time. The cost to the health system is around $80,000 per person, or 16x the annual cost of a CGM.

“Every night, across New Zealand, parents of Type 1 diabetic children have to set an alarm. Mums and Dads get up all through the night, prick their children’s fingers, and test their sugar levels. Can you imagine what that’s like?”

Steph hopes change is coming soon. Frankie’s CGM expires in April and she fears she and Nick will return to the traumatic days of waking their son in the night, and drawing blood from his finger.

“Can you imagine putting needles into your toddler’s hands at least eight times a day? I’m his Mum, the last thing I ever want to do is cause him pain.”

“At the very least, could we fund these monitors for children? Can we stop our kids ending up in the emergency wards?”

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