Lyla Story was laughing excitedly as she and her older brother fed the animals at a local farm on her second birthday in April.
‘The goats were tickling her hands and this made Lyla and Jack giggle their heads off,’ says their mother Emma, 41, who works for the local authority.
‘There were lambs and horses, too – Lyla was mad about animals, even creepy crawlies. It was such a happy family day out – and we finished off with ice-creams, which Lyla also loved.’
‘On the way home, we were counting down the days until our family holiday in Crete, which was in a month’s time,’ adds her husband John, 44, who works with visually impaired people.
‘The kids were so excited about flying in a plane and playing in the sea – everyone was looking forward to it,’ he says.
But Lyla would never make it to the family holiday. Within three weeks of her birthday, the ‘cheeky, sassy and caring’ little girl was taken seriously ill.
Tragically, she died from complications of type 1 diabetes – a condition no one knew she had, nor did doctors recognise the classic symptoms she showed.
John’s eyes fill with tears as he says: ‘Lyla was a bright, independent little girl who was always jumping on her trampoline and barely had a day’s illness. Yet 16 hours after Emma took her to the GP, she was dead.
‘How was her condition missed? She was completely failed by the system.’
Lyla Story died aged two from complications of type 1 diabetes – which no one knew she had
Emma and John Story say that Lyla was ‘completely failed by the system’. The symptoms they’d reported to their GP were classic signs of type 1 diabetes
Diabetes occurs when the body struggles to regulate blood sugar levels because it stops producing, or responding to insulin – a hormone that clears glucose from the bloodstream.
Type 2 diabetes affects more than four million Britons and typically develops gradually as the body stops responding to insulin – mostly due to lifestyle factors such as obesity. And type 1 is caused by the immune system mistakenly attacking insulin-producing cells in the pancreas so the body suddenly can’t produce insulin.
Around 400,000 people have type 1, which can affect anyone at any age. Symptoms can appear suddenly and rapidly escalate, explains Dr Chris Cooper, a consultant paediatrician at Stockport Hospital. ‘Because the insulin supply ceases quickly as the cells are destroyed, deterioration can be very rapid. This can be particularly true for very young patients.’
A study by the University of Exeter shed light on why this occurs with such devastation in small children. Researchers studied pancreas samples from 250 people of varying ages with and without type 1, and found that those diagnosed in adolescence and adulthood sometimes retained a few clusters of insulin-producing cells.
But the clusters were completely absent in children under seven who had type 1 – suggesting their immature cells could not stand up to an immune system attack, reported the journal Science Advances.
‘A small child who develops type 1 can quickly be in a very serious condition,’ says Dr Cooper.
Certainly, the speed with which Lyla deteriorated was shocking.
John and Emma wipe their eyes as they think of the events in early May that so swiftly turned to tragedy.
Lyla was a bright, independent little girl who was always jumping on her trampoline, says John
At the start of the week, Lyla was a bit ‘sniffly’ and ‘rosy-cheeked’ which, along with a slight loss of appetite, her parents put down to teething. But over the next four days she had more wet nappies, was thirstier and ‘just seemed tired and lethargic’, says John.
Her parents were struck with how much weight she’d lost. ‘Her face was gaunt and thin’, says John. She was also being sick. Emma took her to the GP, who diagnosed tonsillitis, prescribing antibiotics. She said Lyla should be taken to A&E if she didn’t improve within 24 hours. ‘But she didn’t last 24 hours,’ says John.
The couple put Lyla to sleep in their bed; her mum beside her. ‘She seemed comfortable,’ Emma recalls. John fell asleep on the sofa and went to check on his daughter in the early hours.
He swallows hard and pauses.
‘Lyla was freezing cold,’ he remembers. ‘Her lips had turned grey and her eyes were open. I knew she was gone.’
His scream woke Emma, who quickly put Lyla on the floor, called 999 and began CPR. ‘I reacted on autopilot but I knew deep down that she wouldn’t come back,’ she says.
Meanwhile, John led four-year-old Jack, woken by the commotion, downstairs away from the scene.
An ambulance swiftly arrived, but resuscitation proved futile. Lyla was pronounced dead in hospital at 5.25am on May 3. The cause of death was undiagnosed type 1 diabetes.
Post-mortem blood tests revealed Lyla’s HbA1c levels (a measure of the blood’s ‘sugariness’) had been 89mmol/mol (normal is below 42).
She was also found to have had a gastrointestinal bleed and developed diabetic ketoacidosis (DKA), a sudden-onset life-threatening complication of diabetes where the body starts breaking down fat too quickly. This releases high levels of acidic ketones into the blood, which effectively poisons the body.
Her parents would later find out the symptoms they’d reported to their GP – vomiting, thirst, lethargy, weight loss – were classic signs of type 1 diabetes and DKA.
Dr Cooper explains: ‘Without insulin, sugar builds up in the blood. The body tries to get rid of the excess sugar by peeing more frequently, but this results in loss of water and causes thirst.
‘As sugar is not being stored for future energy, the person becomes more tired and lethargic. With no energy, the body quickly switches to starvation mode and begins burning fat and muscle for energy – which leads to weight loss.’
This can progress into DKA.
According to official guidelines, GPs should do a pin-prick blood test to measure glucose levels on any young person with these symptoms (known as the four Ts, see box) or refer them to a paediatric unit.
‘There needs to be more awareness among parents, GPs and the public that these symptoms could be type 1 diabetes and can affect young children,’ says Dr Cooper.
‘It’s vital to have this in mind if a child has them – particularly given the rapidity with which the condition can progress.’
Hilary Nathan, director of policy at charity Breakthrough T1D, adds: ‘Another problem is children could be ill with these symptoms for many reasons, including normal stomach bugs or flu.’
Dr Cooper agrees: ‘It can be hard for a parent to tell the difference between tiredness and normal toddler crankiness, or to clock that nappies are heavier than usual.’ But he adds: ‘The fact that small children can’t communicate the severity of their conditions means they are reliant on adults to realise something is wrong.’
Around 38 per cent of children’s type 1 diabetes cases in England and Wales are diagnosed after they’re admitted to hospital with DKA, says Dr Cooper.
After Lyla’s death, John posted about the tragedy on Facebook – and was astonished how many other parents had similar experiences of missed type 1 diabetes.
‘We’ve had more than 300 emails and thousands of online comments from people whose children were only diagnosed in critical care with DKA – some ending in tragedy, as ours did,’ he says.
‘I realised then that something needed to change.’
The couple are campaigning for Lyla’s Law – calling for babies, toddlers, children and adolescents to automatically get urine and/or blood tests for diabetes if they had any relevant symptoms. And they want GPs who don’t adhere to this to be sent on awareness courses.
‘We want to make sure no more children are lost due to delayed diagnosis of type 1 diabetes,’ says John. ‘Very small children cannot explain their problems, so the system needs to be fool-proof to ensure they are protected.’
To sign John’s petition, visit: petition.parliament.uk/petitions/728677