Lyla Story was just two years when she died in her sleep from undiagnosed type 1 diabetes
John and Emma Story outside Number 10(Image: Submitted)
The dad of Hull two-year-old Lyla Story, who daughter tragically died from undiagnosed type 1 diabetes has been nominated for a regional award in recognition of his tireless campaigning to improve early diagnosis of the condition. John Story has been nominated for a BBC Radio Humberside Make a Difference Award after spending the past year campaigning for mandatory type 1 diabetes testing for children whenever any of the ‘4 T’s’ appear: Toileting, Thirst, Tiredness and Thinning.
The campaign for change was launched following the tragic death of Lyla, after early signs of her type 1 diabetes were not recognised by the NHS. Concerning symptoms, including increased thirst and more frequent wet nappies, were reported by Lyla’s mother, Emma Story, but Lyla was diagnosed with tonsillitis during a GP appointment. Lyla died in her sleep on May 3, 2025, just 16 hours later.
In response, John and Emma launched a petition in her memory calling for Lyla’s Law. The proposed legislation would embed NICE Guideline NG18 into law and introduce a ‘test, don’t guess’ framework to ensure children receive timely care and resources, preventing them from reaching diabetic ketoacidosis – a potentially life-threatening complication.
After the petition surpassed 121,000 signatures in December 2025, MPs held a Parliamentary debate on March 9, 2026, to discuss the proposal. John also met with the then Health Secretary Wes Streeting to share Lyla’s story and advocate for improved recognition and testing of the condition.
The submission for John’s nomination stated: “John has channelled his grief into campaigning for Lyla’s Law. He has campaigned for this on local radio and local and national TV.
“While doing this he has highlighted the dangers and symptoms of type 1 diabetes to countless families and has received messages from families thanking him after their children had been diagnosed.” The nomination submission continued: “John has been a pillar of strength throughout his ordeal, determined that his story should be heard and for the same grief to never be felt by other families.
“He doesn’t crave recognition for what he is doing, but he deserves it and this award would bring much appreciated attention to his campaign.”
John said: “I am absolutely thrilled and really honoured to have been nominated for this award. It means a great deal to know that Lyla’s story and everything we have been doing to raise awareness of type 1 diabetes is being recognised in this way.
“If it helps even one more family spot the signs sooner and get the right support in time, then speaking out has been worth it, and I will keep doing everything I can to make sure that happens.” The BBC Radio Humberside Make a Difference Awards celebrate individuals and groups who improve the lives of people across northern Lincolnshire and East Yorkshire.
Entries are currently being reviewed by the judging panel, who will soon select 32 finalists. The shortlist will be announced live on BBC Radio Humberside in the summer.
Those shortlisted will be invited to attend the BBC Radio Humberside’s Make a Difference Awards ceremony, which will take place in September.
Did you know you can make Hull Live a preferred source of Hull news in Google, which will mean you get more of our breaking news, exclusives, and must-read stories straight away? Here’s more information about what this means and how to do it – you can also do it straight away by clicking here.