'Lyla's Law can be lasting legacy for my daughter'

The father of a two-year-old girl who died from undiagnosed type 1 diabetes says her family will not give up campaigning for a change in the law.

Lyla Story, from Hull, died in May last year less than 24 hours after her mother had taken her to their doctor, who diagnosed acute tonsillitis, an inquest heard in September.

Dad John Story said the introduction of "Lyla's Law" – routine testing for those showing symptoms – would be a "lasting legacy" for his daughter, who should have been celebrating her third Christmas.

An NHS spokesperson offered their "deepest sympathies" to Lyla's family and said healthcare professionals followed "evidenced clinical guidelines for diagnosis and care".

"The work that is being done at the moment is all driven by her," Mr Story added.

"I know she would want to safeguard children going forward.

"Had she been alive today she would be showing off a festive sticker to cover her constant glucose monitor.

"I am immensely proud of her because she really is driving awareness out there."

A petition calling for Lyla's Law has more than 120,000 signatures, meaning it should be debated in Parliament in the coming months.

Mr Story said there needed to be more awareness among doctors and the general public.

A test at the point of contact with children showing symptoms could ensure they were sent to hospital "without the threat of being diagnosed at near-death stage, which so many children are doing", he added.

Guidelines given to GPs by the National Institute for Health and Care Excellence (NICE) state that if doctors suspect type 1 diabetes in children and young people, they should be referred immediately to a specialist for diagnosis.

Clare Howarth, from the charity Diabetes UK, said time was of the essence when people were showing symptoms.

"It should be at the forefront of all healthcare professionals' minds to do a very quick finger-prick blood test, which will give a reading of how much glucose is in the blood.

"If we catch the onset of type 1 diabetes quickly, it means that people won't die."

The four common symptoms of type 1 diabetes, known as the 4 Ts, include:

• Toilet - urinating more frequently, especially at night
• Thirsty - being constantly thirsty and not being able to quench it
• Tired - being incredibly tired and having no energy
• Thinner - losing weight without trying to

The spokesperson for NHS England said anyone who believed their child was experiencing the symptoms of type 1 diabetes "should seek urgent medical assistance".

Responding to the petition in July 2025, the government said the NHS provided diabetes care in children, but there was "insufficient evidence supporting routine mandatory testing" and there were "no plans to introduce this at the current time".

However, the government statement said "early identification of type 1 diabetes through screening for antibodies prior to the onset of physical symptoms" could "provide clinical benefits".

A study was under way to explore the "the feasibility and benefits of screening" for children aged three to 13, it added.

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