John Story’s little girl Lyla sadly died last year and he is now a Type 1 diabetes campaigner and fundraiser
Lyla Story from Hull sadly passed away on May 3, 2025(Image: The Story family)
A Hull father who turned the devastating loss of his two-year-old daughter into a national campaign for diabetes healthcare reform has benefited from a new fund. John Story, who is fundraising for HEY Kids, is the first person to receive The Olive Fund, which he accepted on behalf of the local charity.
Launched by local firm Pepperells Solicitors, The Olive Fund is a £500 grant to support causes in the community. John’s beloved daughter, Lyla, died suddenly after a GP missed her symptoms of Type 1 Diabetes (T1D) in May last year.
Presenting with typical symptoms known as the ‘4 T’s’ (Thirsty, Tired, Toileting and Thinning), Lyla was sent home with antibiotics. She died in her mother’s arms less than 16 hours later.
Following the tragedy, more than 400 families came forward with comparable stories: children dismissed as having a virus, teenagers told they were too young to have diabetes, and adults turned away until they were left fighting for their lives.
John said: “All of this confirmed what I had come to suspect: that the T1D community were being failed not only by isolated mistakes, but by a systemic problem in primary care going back decades.
“I’m standing on the shoulders of hundreds of thousands of Type 1 giants. Lyla’s story was the straw that broke the camel’s back.”
John campaigned for what is now known as Lyla’s Law, which would see Type 1 diabetes testing become mandatory for children presenting with any one of the 4 T’s.
The campaign has already reached significant milestones. NICE guidelines were amended within nine months of John’s initial campaign – a process that ordinarily takes up to a decade. The Care Quality Commission has also updated its T1D guidance, and a screening bill is now proceeding to its second reading in Parliament.
Closer to home, John now fundraises for HEY Kids, a community charity in Hull and East Riding that supports families and children living with Type 1 Diabetes. Like many local charities, HEY Kids has faced serious financial pressure since the pandemic.
The Olive Fund, which was officially launched by Pepperells Solicitors in April, has pledged its inaugural £500 donation to HEY Kids on behalf of John, which will allow their life-changing work with other children to continue.
Stephen Orridge, Executive Director at Pepperells, said: “Lyla’s story, although heartbreaking, has had an incredible impact in Hull and far beyond. John has channelled unimaginable grief into something that is already saving lives.
“The determination he has shown in fighting for change at every level is truly humbling. The Olive Fund exists to get behind people who are doing something that matters, and John is exactly who we had in mind. We hope this donation to HEY Kids makes a real and lasting difference to every family they support.”
John believes the recognition reflects something important about the way local support works, and why it matters.
He added: “This support sends a message. It says: we see what you’re doing, and we believe in it. And we want to help you keep going. Because we know how hard it is for local charities to stay afloat.”
John is a passionate advocate for locally rooted, volunteer-run organisations. He argues that as national charities have shifted focus towards policy and large-scale awareness work, the grassroots support networks they once provided have disappeared, leaving a gap that only community fundraising can fill.
“If you look after it at the grassroots level, it will grow,” he said. “Your bigger organisations will notice, and you’ll get even more support. It’s a snowball effect.”
For John, none of this is about him. Everything that he does is for Lyla. “I’m just her vessel,” he said. “Every great band needs a frontman. The genius is always the one in the background. This is all Lyla’s work. It will always be Lyla’s work.”
Pepperells has encouraged others who may benefit from the Olive Fund – whether individuals or charitable causes – to apply for future funding via their website: Olive Fund.
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