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BBC Breakfast visitor breaks down in tears and sobs ‘she must be right here’ recounting loss of life of two-year-old daughter after deadly misdiagnosis

A BBC Breakfast guest broke down in tears and sobbed as he recounted the death of his two-year-old daughter after she was fatally misdiagnosed.

During Tuesday’s episode of the early morning BBC One show, Sally Nugent and Jon Kay were joined by John Story, who has been campaigning for Lyla’s Law following the tragic loss. 

John and his wife Emma, from Hull, took their daughter Lyla to the GP in May after noticing signs she was not well – with the doctor diagnosing her with acute tonsillitis.

She was incorrectly diagnosed due to her symptoms, which included increased thirst, tiredness, and frequent urination, as tonsillitis, with the main cause of her illness missed.

The tot tragically passed away just 24 hours from diabetic ketoacidosis after being misdiagnosed, with the Hull Royal Infirmary discovering she had undiagnosed type one diabetes

Sally, 54, and Jon, 55, revealed that John had been ‘campaigning for better education and awareness’ by calling for new legislation on ‘mandatory testing’ known as Lyla’s Law. 

A BBC Breakfast guest broke down in tears and sobbed as he recounted the death of his two-year-old daughter after she was fatally misdiagnosed

A BBC Breakfast guest broke down in tears and sobbed as he recounted the death of his two-year-old daughter after she was fatally misdiagnosed

During Tuesday's episode of the early morning BBC One show, Sally Nugent and Jon Kay were joined by John Story, who has been campaigning for Lyla's Law following the tragic loss

During Tuesday’s episode of the early morning BBC One show, Sally Nugent and Jon Kay were joined by John Story, who has been campaigning for Lyla’s Law following the tragic loss

Lyla’s father John told the hosts: ‘It’s six months yesterday since Lyla passed. We’re very up and down. 

‘Firstly, I’d like to say thank you so much for breaking the story about Lyla back in September, but there is something I want to point out in relation to what NHS England said.  

‘They said that type one diabetes is uncommon in young children. That’s not true. Most cases are between six months and five years old, and 26% of people across the board are diagnosed in a state of diabetic ketoacidosis. 

‘However, in under fives, that is between 38% and 45%.’

According to the NHS: ‘Type one diabetes is a condition where your body cannot make a hormone called insulin. This causes the level of glucose (sugar) in your blood to get too high.’ 

Breaking down in tears, he continued: ‘There are children around the country being strapped to tables, desperately trying to find a vein to put a cannula in. This has to stop.

Reflecting on what could have been done to save Lyla’s life, John added: ‘The finger prick test. You can take urine samples, which is the warning. But the finger prick gives you the confirmation.

‘Had she had that finger prick, she would be alive today, as would many of us. Over ten children a year in the UK die from undiagnosed type one diabetes, and it’s just got to stop.

The tot tragically passed away just 24 hours from diabetic ketoacidosis after being misdiagnosed, with the Hull Royal Infirmary discovering she had undiagnosed type one diabetes

The tot tragically passed away just 24 hours from diabetic ketoacidosis after being misdiagnosed, with the Hull Royal Infirmary discovering she had undiagnosed type one diabetes 

John has been 'campaigning for better education and awareness' by calling for new legislation on 'mandatory testing' known as Lyla's Law.

John has been ‘campaigning for better education and awareness’ by calling for new legislation on ‘mandatory testing’ known as Lyla’s Law.

‘This is why Lyla’s Law is so important. If a child is displaying any one of the [symptoms], it’s critically important to go to the top, rule it out and work your way down until they find the cause.’

John and his wife Emma previously appeared on BBC Breakfast in September, where they both fought back their emotions telling her story. 

Overcome with emotion reflecting on the loss of his daughter, John said: ‘There needs to be more awareness in primary care settings.  

‘There needs to be more awareness in the general public. We were guilty of that. We didn’t know anything about Type 1 and how dangerous it could be.  

John explained: ‘Obviously at the time, we knew nothing about Diabetes whatsoever. We learnt pretty quickly afterwards.’

The couple, who have created the Lyla’s Law petition, want a change in the law which will make GPs test babies and young kids of ‘the four Ts’.

He added: ‘Once they are displaying signs of the four Ts, toileting, thirst, thinning and tiredness, basically it’s a ticking time bomb.’

Emma said: ‘I want GPs to do that pin prick test just to rule it out, especially someone of Lyla’s age that can’t say “Mummy I’ve got a headache, or I’ve got a ear ache”.’ 

John previously appeared on BBC Breakfast in September to open up about his daughter's death

John previously appeared on BBC Breakfast in September to open up about his daughter’s death

John explained: ‘And for some reason, I don’t know why, but Type 1 Diabetes care is going to the back of the queue.’ 

Speaking about their beloved daughter, John said: ‘She was a kind, compassionate, caring young girl. She loved pink and yellow roses. 

‘She also had a sassiness to her. She was just adorable.’

With tears forming in her eyes and wiping them from her face, Emma added: ‘Full of life. Everyone loved her.’ 

The Lyla’s Law petition, which ends in December this year, currently has 46,854 signatures, and aims to get funding so that all infants are offered testing for Type 1 Diabetes in routine care.

It states: ‘We believe that lives could be saved by doing this. 

‘Too many children are misdiagnosed, and this can tragically lead to loss of life.’ 

Breakfast airs weekdays from 6am on BBC One and is available to stream on iPlayer. 

In the UK about 90 per cent of diabetic adults have Type 2 diabetes

Diabetes is a lifelong condition that causes a person’s blood sugar level to become too high.

There are two main types of diabetes: 

Type 1, where the body’s immune system attacks and destroys the cells that produce insulin. 

Type 2, where the body does not produce enough insulin, or the body’s cells do not react to insulin. 

Type 2 diabetes is far more common than Type 1. 

In the UK, around 90% of all adults with diabetes have Type 2. 

Reducing the risk of Type 2 diabetes can be achieved through healthy eating, regular exercise and achieving a healthy body weight. 

The main symptoms of diabetes include: feeling very thirsty, urinating more frequently (particularly at night), feeling very tired, weight loss, and loss of muscle bulk.

Source: NHS