A fundraising event has been arranged for Sunday 10 August 2025 at The Goodfellowship Inn, Cottingham Road, Hull, HU5 4AT, to help raise money for Lyla’s Law, which is a campaign calling for routine screening for Type 1 Diabetes in babies, toddlers, children and adolescents.

The event, which runs from 12pm until closing, is open to all, with a chocolate board, raffles, auction, entertainment and special guests. All proceeds from the event are going to Breakthrough T1D UK, which is a charity leading research with the aim of treating, preventing and curing Type 1 Diabetes and promoting access to better treatments and technologist.

This amazing event has been organised by John Story, who tragically lost his daughter Lyla to complications of undiagnosed Type 1 Diabetes on 3 May 2025. Little Lyla was only 2 years old when she passed away and she is described by John as being ‘bright, caring, sharing, full of life, counting into her twenties, bouncing on her trampoline and dancing every day’.

Less than 16 hours before she passed away, Lyla had been taken by her mum to see the GP, due to some worrying symptoms that she had recently developed. Lyla had with extreme tiredness, loss of appetite, lack of energy, increased fluid intake, rapid weight loss and other symptoms which are common to Type 1 Diabetes and the complications which can arise. Despite these concerning symptoms, Type 1 Diabetes was not suspected and instead the GP diagnosed Lyla with tonsilitis and advised her mum to monitor her.

After Lyla passed away in her sleep, it was investigated what had happened to her. It was diagnosed that she had suffered acute diabetic ketoacidosis. This is a serious complication associated with Type 1 Diabetes, whereby your body does not have enough insulin to allow blood sugar into your cells for use as energy. Instead, the body breaks down fat for fuel and this produces acids called ketones. When too many ketones are produced too fast, they build in your blood. This is a medical emergency which requires urgent treatment in hospital.

Lyla’s cause of death was noted to be type 1 diabetes, undiagnosed, leading to acute diabetic ketoacidosis. Lyla was also suffering from Covid 19 at the time, and this accelerated the breakdown of her immune system.

Had the GP suspected diabetes in Lyla, she could have undergone blood and urine testing which is likely to have showed a build up of ketones. If it had been diagnosed, Lyla may have been able to be treated and have avoided the tragic events that followed.

We can only begin to imagine the impact of the loss of Lyla on her family and we think it is truly admirable that they are trying to bring about positive change to avoid other families having to go through what they have. We would urge anyone reading this post to spread the word and to show their support for both Lyla’s Law and the fundraising event. A GoFundMe page has been set up for Lyla’s family here.