In a heartbreaking case, a two-year-old girl from Hull named Lyla Story tragically passed away last year due to undiagnosed type 1 diabetes. Her father, John Story, is now campaigning for “Lyla’s Law” – a proposal that would see routine testing for those showing symptoms of the condition, in the hopes of preventing similar tragedies.
The inquest into Lyla’s death in September heard that she died less than 24 hours after her mother had taken her to the family doctor, who had diagnosed her with acute tonsillitis. However, it was later revealed that Lyla had in fact been suffering from undiagnosed type 1 diabetes.
Heartbroken by his loss, John Story has been vocal in his calls for change. In an emotional voice clip played to Health Secretary Wes Streeting during a BBC radio interview, Story pleaded: “There are too many people getting diagnosed in critical care, especially young children who cannot advocate for themselves and express what they’re feeling. It’s on your watch, Wes. Please meet with me.”
Streeting swiftly responded, saying: “That’s the easiest question to answer. Yes, I’ll definitely do that. If you pass the details to me today, I’ll get my office to get in touch and we’ll get him in as quickly as we can.”
A petition calling for “Lyla’s Law” has already garnered over 120,000 signatures, meaning it will be debated in Parliament in the coming months. Story says he is “cautiously optimistic” and “very hopeful” that he will hear from Streeting in the next few days, adding that he is “really proud” of the opportunity to discuss the proposal directly with the Health Secretary.
Current guidelines from 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. However, Story has revealed that he has received over 400 emails from other parents whose children have been diagnosed in critical care, highlighting the urgent need for reform.
As the nation watches on with bated breath, the tragic loss of little Lyla Story could pave the way for lasting change, ensuring that no other family has to endure the same heartbreak.
