Winner

John Story
Father of Lyla, Lyla’s Law campaign

Summary

This nomination honours John Paul Story, father of two-year-old Lyla, who tragically died on 3 May 2025 from undiagnosed Type 1 Diabetes, less than 16 hours after being misdiagnosed with tonsillitis. Her symptoms — thirst, vomiting, tiredness, weight loss — could have been identified with a simple urine test. In Lyla’s memory, John created #LylasLaw, a campaign calling for routine diabetes screening in children where symptoms warrant it, stricter adherence to NICE NG18, inclusion of diabetes guidance in the “Red Book,” better education for GPs and health visitors, and antibody testing for at-risk children. Through petitions, media, and public events, John has transformed personal tragedy into a movement for change, supported by thousands across the UK. His tireless advocacy embodies the spirit of Quality in Care – Diabetes Hero of the Year: courage, compassion, and a determination to save lives. 

Why do they deserve to win?

On 3rd May 2025, two-year-old Lyla Story tragically lost her life to undiagnosed Type 1 Diabetes, less than 16 hours after being seen by a GP. Her father, John Paul Story, has since channelled unimaginable grief into extraordinary advocacy, creating the #LylasLaw campaign — a movement that calls for systemic change in the way children are screened, diagnosed, and protected from the devastating consequences of Type 1 Diabetes. His determination, compassion, and resilience make him a true Diabetes Hero. Lyla was bright, loving, and full of life. On the morning of her death, she had been taken to a GP after several days of alarming symptoms: extreme thirst, frequent urination, vomiting, weight loss, lethargy, and uncharacteristic quietness. Despite these red flags, she was diagnosed with tonsillitis, prescribed antibiotics, and sent home. By the following morning, she had passed away in her sleep, lying next to her mother. Blood tests taken during resuscitation revealed an HbA1c of 89 (double the normal range) and ketones at life-threatening levels. John and his family later learned that Lyla’s true cause of death was undiagnosed Type 1 Diabetes, accelerated by a COVID-19 infection. Her passing was entirely preventable. A simple urine test could have revealed the seriousness of her condition, triggering urgent referral as required under NICE Guideline NG18. Instead, systemic gaps, assumptions, and a lack of awareness cost Lyla her life. The #LylasLaw campaign is John’s answer to a system that failed his daughter. It calls for: Routine Type 1 Diabetes screening (urine or blood) in babies, toddlers, children, and adolescents during consultations where symptoms suggest diabetes. Greater adherence to NICE NG18, ensuring suspected cases are immediately referred to specialist services. Inclusion of diabetes guidance in the “Red Book”, empowering parents with knowledge of the four “T’s”: Toilet, Thirsty, Tired, Thinner.

Better education for GPs and health visitors, to improve recognition of early signs in very young children.

Antibody testing for children at higher risk, providing surveillance before symptoms become life-threatening.  This campaign goes beyond personal tragedy. It highlights systemic shortcomings and advocates for sustainable, preventative approaches to diabetes care. John’s mission is not just about Lyla — it is about protecting every child at risk, supporting every parent who relies on the healthcare system, and equipping every clinician with the tools they need to save lives.

John’s campaign has quickly gained national visibility, creating a ripple effect of awareness and change: A Parliamentary Petition has already gathered more than 21,000 signatures and continues to grow. Community Events, such as a Family Fun Day in Hull, unite families, businesses, and organisations in Lyla’s memory, raising both awareness and support for reform.

Media Coverage has ensured Lyla’s story is heard across healthcare forums, advocacy groups, and social media platforms, with the message of #TestDontGuess resonating with parents and practitioners alike.

Collaboration with Healthcare Professionals His efforts resonate deeply not only because of the personal tragedy behind them but because of the clarity of his vision: a healthcare system where no child is left behind and no warning sign is ignored.

Courage in the Face of Tragedy – Losing a child is every parent’s worst nightmare. To turn that pain into advocacy requires extraordinary strength. John has shown remarkable courage, refusing to allow Lyla’s story to fade into silence.

Vision for Change – His campaign is clear, evidence-based, and achievable. By linking his family’s experience to established guidelines like NICE NG18 and emerging research such as antibody testing and the ELSA study, John not only highlights systemic failures but proposes practical, life-saving solutions.

Community Leadership – Through events, petitions, and outreach, John has mobilised families, healthcare professionals, and the wider public to rally behind a shared cause. His leadership demonstrates how advocacy rooted in compassion and collaboration can create momentum for change.

Sustainable Legacy – Lyla’s name now stands for hope, reform, and the protection of children. John’s vision ensures her story will protect countless others, creating a legacy that transcends individual grief.

John’s tireless campaign is both a call to action and a beacon of hope. His ability to transform unimaginable grief into a movement for change epitomises the very heart of this award: using lived experience to improve care for others.