One family's bid to combat 'Dead in Bed' syndrome. Meet The Press, Producer Helen Parker

BY the time 17-year-old diabetic Daniella Meads-Barlow was discovered dead in her bed in November 2011, it was many hours since she had fitted and asphyxiated.

The lively strawberry blonde Year 11 student, who lived with her family in Chatswood on Sydney's north shore, had turned in as usual at 10.30pm.

Sometime in the night, her blood sugar levels had fallen so low she became unresponsive, asphyxiated and her heart stopped.

The cause of death was nocturnal hypoglycaemia, an unusual event but one whose incidence is rising at a rate that has diabetics, their families and doctors alarmed.

That Danii died in silence is a tragic irony to her family and friends: her nickname was ''Moty'' or ''Mo-mo'' short for ''motormouth''.

But that night, in common with a growing number of victims of what doctors call ''dead in bed'' syndrome, she didn't make enough sound to her sleeping family.

There was none of the primitive wailing that usually marked the start of her hypoglycaemic fits.

Donna and Brian Meads-Barlow, who had rescued their daughter from so many other traumatic episodes, are tortured by that silence.

''A parent with a child with diabetes never sleeps with the door closed - and never sleeps properly through the night ever again,'' Donna says.

''They are walking on broken glass forever.

''That night there was nothing unusual, nothing. She came into our room and said 'Good night mummy, I love you so, so much'. Then Brian asked her what her (blood sugar) readings were. Daniella was a bit cranky with the question and said 12.2 which was normal. That's the last thing she ever said to us.''

As Donna and Brian managed police, paramedics and Danii's screaming brothers that morning, they found time to call the man who had been treating her for 12 years, endocrinologist Dr Neville Howard.

Could he come talk to the police and examine Daniella?

Dr Howard, the senior physician at the Diabetes Centre at the Children's Hospital at Westmead, in Sydney's west, is an old school doctor: calm, assured and efficient.

For 30 years he's been trying to unravel the mysteries of the fastest growing childhood disease in Australia, particularly the form known as '' type 1'' and make sense of the sudden deaths from it.

There are 130,000 people in Australia with type 1 and 80 per cent of them have no family history.

Incidence of all forms of diabetes is growing at a rapid rate of three to five per cent a year.

''Dead in bed numbers will rise with that,'' Dr Howard says.

''It is rare but it is devastating. We don't have current figures on it because it's usually called asphyxiation or hypoglycaemia and autopsies are not usually done, so figures are hard to pin point''.

Ancient Egyptians recognised type 1 diabetes 4500 years ago, as a ''wasting disease'', during which young people weakened and died for no apparent reason.

Put simply, it is the misfiring of the body's auto-immune system: it attacks cells in the pancreas that make insulin.

Insulin is an essential metabolic hormone that allows us to take up glucose for the body to use as fuel.

While historically diabetes was a death sentence, in 1922 there was a breakthrough: injecting insulin was the key to survival.

Originally sourced from pigs - the closest match to human insulin - it is now made synthetically.

Surviving type 1 diabetes means a lifetime of daily insulin injections and meticulous monitoring of blood sugar levels.

''Without insulin you can't use glucose and your cells effectively 'starve','' says another juvenile diabetes authority Professor Tim Jones, from Perth's Princess Margaret Hospital.

In a person without diabetes the pancreas works hard to keep blood glucose (sugar) within a tight range.

For the person with diabetes, insulin has to be injected and if there's a mismatch between the insulin you receive and the amount your body uses, that's a problem.

Your pancreas works hard to maintain these levels within a very defined range.

If blood glucose is too high for too long then it damages cells: effectively aging the body faster and resulting in the complications of the disease in the kidneys, eyes and heart.

On the other hand if there is too much insulin then too much glucose goes into cells and blood sugar levels go low.

Your brain only works on glucose so low glucose is a problem, it can result in unpleasant symptoms and if severe it leads to convulsions, coma and even death.

Scientists suspect the increase in type 1 diabetes is related to the modern world's high levels of hygiene - and to infant feeding.

Westmead's Dr Howard says: ''We see that as countries become more 'westernised' so their rates of type 1 diabetes increases.

''The hypothesis is that when a baby's born it gets an incredible dose of antibodies from breast milk. From an early stage the little baby's body and more importantly its immune system is trying to work out: 'what belongs inside me and what doesn't? What is foreign and what is acceptable?'

''One theory is that processed rather than breast milk is responsible -or the early introduction of other processed baby foods.

''By not exposing our babies at a very young age to germs, dirt, and all forms of bacteria, the body never really learns to differentiate between the good cells and the bad - there's only a limited time for the body to learn these things.

''Today even disposable nappies are used, rather than cloth, so the baby's skin doesn't get the chance to have urine or faeces against it for long. It's soaked up by efficient nappies so the cells never get a chance to learn what's harmful and what's not.

''If you have a perfectly healthy baby that's fine. But if, due to genetics, your baby is pre-disposed to diabetes then these sorts of behaviours can trigger your susceptibility.''

Even the most deprived household in Australia, Howard says, is far cleaner than a good bulk of the world, perhaps this is creating the abnormal growth in westerners.

To test this hypothesis leading endocrinologists from around the world are sharing their diabetes statistics in a number crunching experiment, known as the TRIGR trial.

''It's the largest and perhaps most ambitious primary type 1 diabetes trial in the world,'' Dr Howard, one of the principle investigators in Australia and New Zealand, says.

The trial will culminate in September at a symposium in Barcelona.

There, they will try to make sense of the results. Why is it that Scandinavia, Australasia, the US are seeing such growth?

(Princess Margaret's) Jones notes ''a rise in Type 1 diabetes documented progressively since World War Two.

''For example when the Berlin Wall came down in the 1990's diabetes increased in eastern European countries, so we know it's something to do with our modern lives,'' Dr Howard says.

''But we have no actual proof of what exactly is responsible.

''(Diabetes) is a huge burden on the community and to find the answers is going to take a collaborative effort.''

At Newcastle's John Hunter Hospital paediatric endocrinologist and associate professor Bruce King cautions against being alarmist about type 1 diabetes.

''Since 1922 there have been consistent and progressive improvements in the management of people with type 1 diabetes. With appropriate management, the vast majority of people will live happy, meaningful, productive and long lives. Research and advances in technology continue to produce improvements in management of type 1 diabetes and through these advances we hope that tragedies caused by the dead in bed syndrome can be prevented.''

It's a big ask, given Daniella seemed well the night she died - which is usual for victims of dead in bed syndrome according to recent research.

A study by Tu et al of 400 autopsy reports of type 1 diabetics who died aged under 40 from nocturnal hypoglycaemia, published in the Australian Medical Journal in 2008 noted: ''Typically, these people are in good health when they retire to bed, only to be found dead the next morning. In deceased young people with type 1 diabetes examined by the coroner, acute diabetic complications, unnatural causes, and sudden unexpected deaths were the predominant causes of death. The relatively high frequency of sudden unexpected deaths, such as dead-in-bed syndrome, requires further investigation.''

DONNA Meads-Barlow is a businesswoman, poised and polished with a ''let's-cut-to-the-chase'' approach to life; but on the day I visit, her entire being seems to ache as she sits in the kitchen, staring into space, her worst fears as a mother realised.

Hanging above her is a huge photo of three giggling children in happier times: Daniella, 14; Josh, 12; and Codey, 9.

She and Brian made sure they were always prepared, from the time Danii was diagnosed, at five years old.

Thereafter they were hyper-vigilant. If the situation became critical, the first line of defence was a first aid kit with GlucaGens injection in bright orange syringe; it's an emergency hormonal injection of Glucagon used if patients can't respond to food or drinks

''We always had the kit ready,'' Brian says.

It is still sitting in the usual spot, on a shelf in the fridge door. And still stuck to the kitchen wall are the diabetes emergency numbers, in a child's handwriting.

Every member of the family was on alert.

Losing their larger-than-life sister has created a traumatic shift in the boys.

Josh, 16 and now the eldest, is a gentleman, soulful with a sudden, infectious laugh.

He shows me the wood and metal work tributes he's crafted with ''Danii'' carved into a delicate metal bracelet and seems surprised when I say how beautiful they are.

Codey, 13, and I chat about other things: Bob Marley, Finding Nemo.

He demonstrates his ''drop and roll'' falling technique, leaping off a rock on Australia Day.

The boys shake their heads and laugh.

Brian says they were the front-line of caring for their sister.

''The loungeroom door would burst open at night and Josh would just yell 'Daniella!','' he recalls.

''We'd grab the GlucaGen kit and my glasses and race to her. It was pretty dramatic when a fit happened, plunging this huge needle into her thigh muscle.

''She'd come back around from a fit and see me cradling her, crying over her, and she'd look at me and say, 'It's alright Daddy, you had to do it, I'm alright',''.

The loss of his only daughter, a vivacious kid with an impish sense of humour like his own knocked him ''for six'' he says.

On another occasion when I spend time with the family, he's just returned from the weekly shopping, clearly upset.

He had bumped into parents of students from Daniella's old school at the supermarket.

They turned away, uncertain how to address the death of a much-loved child.

He's stoic but hurt by their reaction.

''That's alright, it's their issue, there's nothing I can do,'' he reasons in loud, staccato sentences as he packs away the groceries.

Later, family friend Craig Davies confirms the devastation the loss of Danii has wrought.

The Davies and the Meads-Barlows have known each other 20 years, shared holidays, watched their children grow up together and relied on each other for favours.

But nothing matched the call for help the morning Daniella was found dead.

''It's impossible to describe,'' Davies says.

''We went around within an hour. It was surreal. The house was hollow, there was a vast emptiness no words could portray. The feeling then and now is still this massive void.

''Brian did go to a very dark and horrible place. Donna addresses and handles everything and is engaged, but Brian was going inward. The fact they're alive and kicking still, well, they are the two strongest people I know.''

Another parent who has had to be strong is Jan Marnell, who lost his son Lewis to nocturnal hypoglycaemia in January.

A champion skateboarder, Lewis was on a winning streak.

The 29 year-old from Fitzroy, Melbourne had signed a sponsorship deal with Nike and had a dream holiday with relatives and friends back in Stockholm before they headed back to Australia for his wedding just seven weeks before he died.

''Friends and relatives in Sweden couldn't believe how the lovely boy they knew had grown into a man,'' Jan says proudly when I call him in Stockholm.

''He managed the diabetes very well and he was very well aware of his eating and balanced that with his lifestyle. Lewis had hypos before but this time...it was no good''.

Lewis was found lifeless at home in the loungeroom on January 18 this year.

As with Daniella, he had been apparently well when he went to sleep that Friday afternoon.

There are painful silences has Jan reflects.

''These things can still happen,'' he says.

''We were so fortunate to have that time together. Lewis was a great proof of living life to full''.

Daniella Meads-Barlow also packed a lot into her short life, she dreamed of being an entertainer and loved to sing.

She'd just scored her driver's licence and had a swathe a good mates.

She was a member of the Australian Girls' Choir and a beaming photo of her in its uniform is among dozens displayed around the family home.

The girls sang their familiar anthem, I Still Call Australia Home at her funeral.

Danii was a seasoned globe-trotter thanks to her parents' travel business.

''Daniella never complained about her disease,'' Donna says.

''By the time she died, she'd tested her blood sugar by pricking her fingers, 760,000 times. But she did say to me: 'How will I survive, Mummy, unless I live up the road from you? How can I live?',''.

Managing diabetes was a tightrope walk for parents who wanted to safeguard their child, but not keep her in cotton wool.

''You want your child to go out into the world, enjoy being a teenager, dance, spend time with friends, but if a diabetic doesn't constantly check their blood sugar levels then the worst can happen,'' Donna says.

Out of their loss has come the determination to help others avoid a tragedy likes theirs, Donna says.

''The morning we found Daniella, Neville Howard sat here in our kitchen with me and said 'There's technology available that may have prevented this',''.

With him, Donna and Brian have set about the task of bringing it to Australia, creating a foundation to fund the endeavour.

Known as 'connected care', the equipment is a continuous glucose monitor (about the size of an old fashioned 'walkman') connected via catheter at the waist with a pump - to deliver insulin - and an alarm that will sound when there's an approaching blood-sugar emergency.

It replaces your need to prick your fingers 10 times a day.

The Danii Meads-Barlow Foundation is also subsidising the funding of 30 Hypomon alarm devices for critically ill diabetics.

The Hypomon, is a very different device to the continuous glucose monitor.

It's an Australian invention and monitors changes in heart rhythm.

It resembles an iPod dock with the monitor strapped around the user's chest at night.

''It might be a bit clunky now but it's a step in the right direction,'' Howard says.

A Hypomon currently costs about $3000.

The foundation's subsidy brings each one down to about $500.

''We want families from all walks of life to have access to it,'' Brian says.

There's often confusion about diabetes 1 and 2, Dr Howard explains: ''Diabetes Type 1 is where the body doesn't make insulin due to pancreas damage from the bodies own auto immune system, where Diabetes Type 2, under pressure from poor diet their bodies can't make enough insulin and they develop insulin resistance but in Type 2 it's still those people genetically susceptible that develop it.''

Like all teenagers, Daniella kept secrets from her family.

About a year ago, her parents unlocked her school computer.

They discovered a story she had written almost three years before she died, about trying to get home from school.

''After a whole humid day of not normal readings (9 and up) I felt dizzy in the head so I did another (blood) test at a low. I went to the escalator. I had an Oreo then...an apple juice...it was getting really hectic.

''I knew I was really low...I got to the Pacific Highway crossing, I burst into tears, I couldn't see properly anymore, I was crying so hard that people walking past me probably thought I had a brain problem.

''I tried really hard to get a lady's attention. She looked at me and I tried really hard to get out what I had to say. I said: 'Help, please help me. Please.'

''I was so lucky I had my diabetes band on. One of the ladies was a nurse and went into the Toyota shop to see if she could get some food for me. I was very thankful but I was horrified. It is so scary to go through something like that. I'm sure it would have been just as scary to watch.''

Community attitudes must change, Princess Margaret Hospital's Jones says.

He has a simple desire in relation to type 1 diabetes.

''I wish for kids to know it's not their fault,'' he says.

''It's not a lifestyle disease, it's not their fault they have it. The community should be more aware of it. People need to know how to support people who have it, because it is around them and it is growing.''

King in Newcastle echoes the sentiment.

''I wish people knew it wasn't anyone's fault. There was nothing the Meads-Barlows' did or that Daniella ate that caused the diabetes. It was no one's fault that Daniella got diabetes, just one of those awful things.

''People with diabetes deserve the same respect and opportunities as anyone else. Schools, workplaces, sporting fields, everywhere should operate in a way that allows people with diabetes to be normal.''

''Loss is a very real part of the job,'' Dr Howard acknowledges.

With her parents' permission, he talks about Daniella, how she danced the day before she died, her last supper - a bedtime snack of custard and bananas - about how she was found that morning, dead, despite all the years of careful nurturing, not least by him.

And then his guard is down for just a second. Pain sweeps across his face like a sheet of rain.

Daniella also wrote on her computer in 2008: ''I ran into the office where my Dad was and gave him a hug. I was so happy to see him and feel properly safe again. Diabetes isn't easy, as you may have noticed. And people need to be aware of it. But thank you to those who helped me back to safety. I feel much better now and more than that I feel happy and safe.''

Go to www.danii.org.au for more information.

Watch the full story on today's Meet the Press on Channel Ten