'A tiny drop of blood can save a child's life'

A bereaved father's call to routinely test symptomatic youngsters for type 1 diabetes has been backed by families of children who nearly died when they went undiagnosed.

John Story, whose daughter Lyla died with the condition in Hull, delivered a 125,000-signature to Downing Street on Monday, which triggered a debate by MPs in Parliament.

Mothers from Essex and Northamptonshire were among those supporting the campaign to introduce Lyla's law after their children became dangerously ill when initial signs of the lifelong autoimmune disease were missed.

Mum Chloe said routine finger prick testing took "one second and that tiny little drop of blood can potentially save a child".

Mandy and daughter Zara, 13, were one of the families who travelled from Rayleigh, Essex, to support Lyla's parents at Westminster.

In August, Mandy drove Zara to Southend University Hospital after believing her daughter was having an asthma attack as her breathing had changed, but was unaware of the seriousness of her condition.

"They told me that's a sign of when someone's dying," said Mandy.

"That's the breathing that they do when they're going to pass away - and if [Zara] hadn't had that, I would have kept her at home and done nothing.

"Then when they say, 'get your family to come and say goodbye'.

"Her three siblings came in, said goodbye and that was heartbreaking."

Mandy had taken Zara to a GP as she was constantly thirsty, tired and losing weight but the symptoms were put down to hormonal changes.

In hospital, tests showed she had diabetic ketoacidosis (DKA).

It is a life-threatening complication where a lack of insulin causes harmful substances, called ketones, to build up in the blood.

Zara pulled through and her diabetes was now being managed.

Her story mirrors that of Chloe, whose son Edison, aged four, fell ill two years ago after being told he was suffering from repeated viruses by a GP before being sent home from Colchester General Hospital.

"It wasn't until the next day that he was rushed into hospital and he was in DKA and I was told he was hours from death," said Chloe, who lives in Dedham, Essex.

"It was absolutely terrifying.

"I would just say to all parents, trust your instincts - if something doesn't seem right, demand a finger prick test.

"I hope our story is quite rare that we actually had a doctor in A&E, unfortunately, not be aware of the symptoms, and they sent us away.

"The diabetes team that look after him now are brilliant."

Chloe told BBC Essex's Sonia Watson she had been amazed by how Edison coped with his condition, especially as he did his own daily finger prick tests.

"He loves life - and I'm so grateful because that is a daily reminder we nearly lost him," she said.

East Suffolk and North Essex NHS Foundation Trust, which runs Colchester General, said it was "not aware of any particular incidents or complaints".

Anna, a mother of a two-year-old from near Kettering, Northamptonshire, said she also wanted to raise awareness among parents and medics after being told her daughter had a cold.

Anna took Sofia to see a nurse at a GP surgery, mentioning the possibility of type 1 diabetes, and felt Sofia could have avoided becoming so ill a few hours later if she had been tested.

"It was just an awful, awful experience I would never want anyone to have to go through," she said.

"I'm absolutely heartbroken for Lyla's parents... it really hits home knowing Lyla's ketone levels were very similar to Sofia's and how close we could have been to our story being very different.

"The finger prick test - it's such a quick and easy thing to do."

The NHS says the most common symptoms of type 1 diabetes are:

• Peeing more than usual, especially at night
• Feeling very thirsty and drinking more than usual
• Feeling very tired
• Losing weight without trying to or looking thinner

Children may have heavier nappies or they may start wetting the bed because they are urinating more.

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