A Hull dad is urging people to plead with their local MPs to attend a parliamentary debate on diabetes testing – saying it will save thousands of children’s lives. John Story’s two-year-old daughter, Lyla, tragically died last year when her type 1 diabetes went undiagnosed despite attending her GP.
John said the cause should be taken seriously by all parents because any child or young adult can get type 1 diabetes, which can cause fatal diabetic ketoacidosis and requires lifelong insulin injections to keep it under control. “It does not discriminate,” he said.
In spite of his grief, John has been campaigning tirelessly since Lyla’s death and secured a Westminster Hall debate on Monday, March 9. The following day, John and Hull North MP Diana Johnson are meeting with Wes Streeting, the Secretary of State for Health and Social Care.
John said type 1 diabetes can “happen to anybody, at any time”. He added: “It does not care if you are healthy or unhealthy, it doesn’t care about your ethnicity, it doesn’t care about your age – if it wants you, it will get you.”
“Bright” and “joyful” Lyla deteriorated rapidly when she became unwell last year. A GP diagnosed Lyla with tonsillitis and, despite the toddler having crucial warning signs of type 1 diabetes, she was not offered a urine dip test.
Like most children with type 1 diabetes, Lyla Story had no family history of the disease(Image: The Story family)
Sadly, Lyla died in her sleep on May 3. It was 16 hours after she had been seen by the GP.
The Westminster Hall debate will discuss changing the NICE guidelines to introduce mandatory type 1 diabetes testing for babies, toddlers and children in medical assessments whenever symptoms of the ‘Four Ts’ are present: Toileting, Thirst, Tiredness and Thinning.
These Ts refer to increased urination thirstiness, tiredness, and weight loss. Before Lyla died, she was presenting with classic symptoms linked to type 1 diabetes, such as a higher number of wet nappies, extreme tiredness, increased thirst, and overnight weight loss.
John said: “At least 10 people have contacted me because of Lyla’s campaign and said ‘You saved my granddaughter’ or ‘You saved my son’s life’.
Lyla’s Law will mandate testing for type 1 diabetes for children presenting with symptoms(Image: The Story family)
“It is such a bittersweet feeling. It still is. People say that I’m saving their lives – no, it’s not me. It’s Lyla, she is saving lives.”
John said at least 10 children die from diabetic ketoacidosis every year. “We are waiting on some new figures to be released and it would not surprise me if it’s more than that now,” he said.
Sadly, up to a quarter of children in the UK are not diagnosed with type 1 diabetes until they are already in diabetic ketoacidosis, according to Diabetes UK. And the number of children with type 1 diabetes is increasing by about 4% every year.
John said he had received condolences from Wes Streeting, but said they are “words at the end of the day”. He added: “I appreciate Wes Streeting’s sympathy, but sympathy alone won’t protect another child.
“My daughter Lyla didn’t die because of a single mistake, she died because the system meant to safeguard her was never designed to recognise the early signs of Type 1 Diabetes in children. And that same systemic failure is putting families at risk every single day.
“Since losing Lyla, I’ve heard from parents across the country who were hours away from the same outcome. The same symptoms missed.
“The same assumptions made. The same lack of checks, that need to become mandatory. These are not isolated incidents, they are a national, systemic pattern, and patterns like this demand action, not just condolences.
“That is why Lyla’s Law is essential. It introduces simple, lifesaving safeguards that should already be in place: mandatory awareness, mandatory testing when any one of the 4Ts present, and a consistent national approach so that no child’s life depends on whether the right clinician happens to recognise the symptoms on the right day.
“I welcome the meeting with Wes, but listening must lead to change. Lyla’s death was preventable. The failure that led to it was preventable. And the solutions are clear, practical, and widely supported by clinicians, charities, MPs, and thousands of families affected by Type 1 Diabetes.
“Our daughter didn’t die from bad luck. She died from a system that wasn’t built to save her. Lyla’s Law is how we make sure no other family pays that price.”
A Department of Health and Social Care spokesperson said: “Lyla’s death was a tragedy and the Secretary of State will be meeting her father John to discuss Lyla’s Law.
“Guidance from the National Institute for Health and Care Excellence is clear – children suspected of having Type 1 diabetes should receive a same-day blood sugar test and be urgently referred to a specialist paediatric diabetes team.
“If a life-threatening complication is suspected, they should be transferred immediately to hospital.”
If anybody would like to help the Lyla’s Law campaign, Diabetes UK has made a simple, online form for writing to your MP which can be found here. A template is provided, but people are encouraged to share personal stories if they have them.
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