In May this year, two-year-old Lyla Story from Hull (United Kingdom) died less than 24 hours after her mother had taken her to the doctor. The family had sought medical advice for what appeared to be a routine childhood illness. The general practitioner diagnosed acute tonsillitis. By the following day, Lyla was in Hull Royal Infirmary. She had developed diabetic ketoacidosis (DKA) and was living with undiagnosed type 1 diabetes.
At the inquest, Senior Coroner Professor Paul Marks ruled that Lyla had died of natural causes. While he described the GP’s diagnosis of tonsillitis as “reasonable”, he also issued a formal Letter of Concern to the Royal College of General Practitioners and the Royal College of Paediatrics and Child Health. In his statement, Professor Marks urged a “wider approach and education” about diabetes, adding that the condition “needs to be at the forefront of clinicians’ minds.”
For Lyla’s parents, Emma and John Story, the coroner’s words reflect both their grief and their determination that no other family should endure such a loss.
For Lyla’s parents, the coroner’s words reflect both their grief and their determination that no other family should endure such a loss.
The Story family is campaigning for what they have named Lyla’s Law. The campaign seeks routine blood or urine tests for type 1 diabetes when a child shows any of the recognised symptoms. These symptoms are commonly known as the “Four Ts”: Toilet (frequent urination), Thirsty, Tired, and Thinner (unexplained weight loss).
During the inquest, John Story spoke of their “darling little girl”, explaining that her death had left “a hole in our lives.” In his appeal to the public, he stressed the simplicity of diagnosis: “If someone is displaying any symptoms of type 1 diabetes, especially in children, just finger-prick them if there is even just one sign to rule it out.”
The family has set up a petition that has already gained close to 35,000 signatures, calling for Lyla’s Law to become reality. They are urging policymakers, health professionals and the wider public to recognise that early testing could save children’s lives.
Advocacy is not just about policy change but also about ensuring that no child is “missed” again. The family is calling for greater public education on the signs of type 1 diabetes. Too often, the symptoms are mistaken for common childhood illnesses such as flu, infections, or, as in Lyla’s case, tonsillitis. Without timely diagnosis and treatment, children can develop DKA, a potentially life-threatening complication.
The campaign for Lyla’s Law surpasses the family’s personal tragedy and resulted in the mobilisation of communities in Hull and across the UK. A charity event in Lyla’s memory will take place at The Inglemire Club in Hull on 1 November 2025. The evening, featuring a race night and auction, will raise funds for Breakthrough T1D UK, which supports research, education, and early detection initiatives.
Advocacy is not just about policy change but also about ensuring that no child is “missed” again.
Lyla’s story raises profound questions about diagnosing type 1 diabetes in children. In the UK, more than 42,000 children and young people live with type 1 diabetes. Each year, hundreds are hospitalised with DKA because of delays in diagnosis. Globally, misdiagnosis and late diagnosis remain widespread, particularly in low- and middle-income countries where routine screening is not standard practice.
The coroner’s Letter of Concern underpins a growing awareness that healthcare systems need to act more quickly and effectively to identify the early signs of diabetes. A routine finger-prick or urine test in primary care could serve as a safeguard. Diabetes advocates believe that this measure would not only prevent tragedies like Lyla’s but also prevent complications and reduce the long-term cost of emergency admissions.
The Story family’s petition is not simply about their own loss. It is a call for systemic change: to ensure that children who present signs of type 1 diabetes are tested immediately. Their campaign underlines that awareness among both clinicians and the public is essential.
Through their petition, charity events and public campaigns, the Story family hopes that Lyla’s Law will one day ensure that every child presenting the Four Ts is tested, every diagnosis is timely, and no parent experiences the pain they now carry.
As the petition gains momentum and the campaign garners national attention, one truth prevails: Lyla’s death was preventable. Greater awareness, education and screening could save countless young lives.
For more insights on the rise of type 1 diabetes in children, adolescents and adults, tune into this episode of D-Talk, where Professors Dianna Magliano and Graham Ogle join host Phyllisa Deroze to examine the reasons behind the rise and share viewpoints on understanding and managing the condition for better outcomes.
Free online course: Type 1 diabetes, treatments and targets
The free 30-minute online course on Type 1 diabetes, treatments and targets in the IDF School of Diabetes covers insulin use, glucose management, and diabetes-related complications. Designed for people with diabetes and their carers, learning points also address lifestyle factors that affect glucose levels, such as diet and exercise.
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