One year on – Lyla’s Law legislation set to make life-saving changes for young people who could have type 1 diabetes symptoms
We talk to campaigner John Story for an update on how his mission to raise awareness about recognising undiagnosed type 1 diabetes symptoms early.
For the latest DRWF Living with Diabetes podcast we talk to John Story to hear about the journey he and his family have been on to help others identify early signs of type 1 diabetes.
John’s daughter Lyla Story died aged two from complications associated with undiagnosed type 1 diabetes in May 2025.
Lyla’s death (three weeks after celebrating her second birthday) followed an episode of diabetic ketoacidosis (DKA) linked to undiagnosed type 1 diabetes and other complications.
Ever since, John and his family have campaigned tirelessly to highlight the risk for others.
John launched the petition with the UK Parliament for the introduction of legislation to improve diagnosis and introduce screening that has recently been presented to parliament after receiving the required 100,000 signatures and is set to be passed.
In addition, many more recommendations are to be made among healthcare professionals to do more to recognise early signs of type 1 diabetes in young people.
Listen to the DRWF podcast interview with John Story, part of the DRWF Living with Diabetes podcast series
John said: “When I start talking about Lyla, I remember her for the girl she was, it was very raw back at that time. You learn to get battle hardened and there seems to have been a lot of significant developments, but there's not that many and it is hard to keep up and remember what we have done.”
Given the circumstances, John never planned for the work he has been involved in over the last 12 months.
John said: “It has evolved and snowballed over time. Originally, Lyla's Law was to make sure that testing is mandatory for type 1 diabetes when a child is displaying any signs of the 4Ts, which are toileting, thirsty tiredness and thinning.
“I can go into robot mode when I say that now, because the more I say it, I really want to annoy the hell out of people with it, so it may plant seeds in the public's mind. It was that, and it was about inclusion of type 1 diabetes in the child's red book (Personal Child Health Record (PCHR) given to parents at a child's birth). Getting more public and professional awareness of not just the 4Ts, but type 1 diabetes.
“It is important to note as well that Lyla’s Law is not about screening, it is about getting it right first time in primary care, tackling variation. That strengthens the argument for a screening programme afterwards. I am for a screening programme, but it is important to reflect that Lyla's Law is not about screening.”
For more information about the 4Ts, read the DRWF Signs and Symptoms of Diabetes information leaflet here
John said his work has moved towards education and awareness: “I have been liaising with the General Pharmaceutical Council, the Medicines and Healthcare Regulatory Authority (MHRA) and I have been in contact with Bridget Phillipson, Secretary of State for Education. This is all in relation to the fact that we need to be getting education right in schools, particularly with the mobile phone ban coming in.
“I am sure that there will be medical exemptions for people with type 1 diabetes, but what I'm battling against here is the narrative being given by politicians, which only accentuates the anxieties of those living with the condition and their loved ones. They need to be changing the narrative to say, unless medically exempt, we will be locking up your mobile phone.”
In the process of raising awareness to healthcare professionals, John estimates he has contacted more than 7,000 GPs to date.
John said: “It is a bit of a personal crusade. I am working with NHS England and prominent members in the field, but I feel that we need to be infiltrating from all angles.
“I am now getting replies from GP surgeries that are in support of the Lyla's Law campaign. There was a surgery in Birmingham, and their primary care network are introducing Lyla's boxes within their practices, in which they will have the kits readily available to test and up-to-date information, which I thought was incredible. I shed a tear over that. It was a wonderful concept.”
John said the loss has left he and his wife Emma and son Jack with a “hole in our lives now that can never be replaced”. However, talking regularly about Lyla keeps her memory close.
John said: “Let’s never stop talking about her, because she will always be a part of us. I never thought that this campaign would reach the levels it has. I feel like now Lyla has an extended family.
“Talking about Lyla is draining, but I owe it to Lyla, and I owe it to the community. Both diagnosed, and undiagnosed because if you have not got that awareness out there it is going to happen again. We cannot have any more Lyla’s.”
Listen to the DRWF podcast interview with John Story, part of the DRWF Living with Diabetes podcast series
View the Funding so all infants are offered Type 1 Diabetes Testing in routine care petition
Read more Addressing the challenge of misdiagnosis of type 1 diabetes in young people
Read more about type 1 diabetes
For more information about the 4Ts, read the DRWF Signs and Symptoms of Diabetes information leaflet here
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