Lyla Story, a two-year-old from Hull, died in May 2025 after her condition was initially thought to be acute tonsillitis. According to a report into the circumstances surrounding Lyla's death, she passed away less than 24 hours after her mum had taken her to the GP who prescribed antibiotics for suspected tonsillitis. Lyla was just two years old when she died in undiagnosed type 1 diabetes.
According to reports, on May 3, 2025, Lyla tragically passed away in her sleep merely 16 hours after being diagnosed with tonsillitis by a GP, despite exhibiting classic symptoms associated with type 1 diabetes, such as an increased number of wet nappies, extreme fatigue, heightened thirst and overnight weight loss. According to reports, John Story appeared on the BBC show to discuss the case. Type 1 diabetes can develop at any age.
It's diagnosed with a blood test which checks for high sugar levels. Lyla's family are calling for a change in the law. They want GPs to routinely test babies and young children if they have common symptoms of diabetes known as the 4 Ts - toileting, thinning, thirst and tiredness.
Her family initiated a petition advocating for Lyla's Law. This law would legislate NICE Guideline NG18, making routine diabetes testing compulsory for babies, toddlers, children and adolescents whenever any of the '4 Ts' appear: Toileting, Thirst, Tiredness and Thinning. John Story said, 'If she had just been finger pricked at the GP surgery, the likelihood is she'd be alive today.
There needs to be more awareness in primary care settings. There needs to be more awareness among the general public because we were guilty of that. ' He added, 'We need education and accountability.
' Lyla's father, John Story has secured a Westminster Hall debate on Monday, March 9, to discuss the case for introducing mandatory type 1 diabetes testing for babies, toddlers and young children as a standard part of medical assessments when symptoms are present. Later today MPs will debate whether there should be routine testing for type 1 diabetes in children who are showing symptoms. It comes after a petition for what's called Lyla's Law received more than 120,000 signatures.
John Story said, 'So, for everybody that signed the petition, because I mean last time I was on I think it was only on about 50,000, got to 121,000. ' John is scheduled to meet the Health Secretary on Tuesday, March 10, to continue discussions on the Lyla's Law campaign. The Lyla's Law petition can be found on Parliament UK.
To honor Lyla's memory, businesses throughout Yorkshire are being encouraged to back a charity race night. The race night is scheduled to commence at 7pm on Saturday, April 11, at the Rising Sun Pub in Mizzen Road, just off Beverley Road in Hull. The event will mark what would have been Lyla's third birthday and celebrate the life of the 'caring, kind and beautiful' little girl, who is fondly remembered for her infectious smile and enormous heart.
Lyla's family are urging local businesses to participate by sponsoring races, donating raffle prizes or attending the event, helping to raise crucial funds and boost awareness in her memory. The evening will consist of eight races and one auction race, with horses available to buy for £5 each. All proceeds will be donated directly to the HEY Kids Type 1 Diabetes Children and Family Support Group.
John Story said, 'This race night is not just a fundraiser, it is a celebration of Lyla's life. It is a moment for our community to stand with us, and it is a way to push forward the change that should have protected her. By supporting this race night, businesses and our community can help turn Lyla's story into action, raising awareness of the 4 Ts, driving Lyla's Law forward and protecting other children.
' Lyla's father described her as, 'She was a kind, compassionate, caring young girl. She loved pink and yellow roses. She also had a sassiness to her.