Tragic death highlights urgent need for greater understanding of type 1 diabetes

Lyla died from diabetic ketoacidosis (DKA), a life-threatening complication that can occur when type 1 diabetes (T1D) goes undiagnosed.

Type 1 diabetes is a serious autoimmune condition where the body stops producing insulin, the hormone needed to regulate blood glucose. Without insulin, glucose levels rise to dangerous levels. This can cause diabetic ketoacidosis, a life-threatening complication that can result in coma or death if not treated quickly. T1D is one of the most common long-term illnesses in children. However, approximately one in four children are only diagnosed when they develop DKA. Being diagnosed in this way is preventable if the signs and symptoms are identified earlier.

John Story, father of Lyla Story said: “On May 3rd, 2025, our bright, caring, sharing and beautiful little girl, tragically passed away in her sleep, less than 16 hours after being seen by a GP and diagnosed with tonsilitis. Our daughter is sadly the product of a system that too often overlooks the signs of type 1 diabetes in very young children. Change is desperately required at Primary Care level.”

Karen Addington, CEO of Breakthrough T1D said: “We are devastated by the death of Lyla Story. No parent should ever have to endure the loss of their child’s life as a result of undiagnosed T1D. Our hearts go out to Lyla’s family, and we are supporting them in their campaign to raise awareness of T1D.

“Currently, more than a quarter of children with T1D are only diagnosed when they are already in life-threatening DKA. This is too late. We can and must change this.

“The NHS needs to improve training to better diagnose children already showing the signs and symptoms of T1D. The NHS should also harness the new opportunities now available for early, pre-symptomatic diagnosis through screening. In this way we will save lives, heartbreak and improve the health of people who develop T1D.”

The warning signs of T1D

We are urging families and healthcare professionals to be alert to the 4Ts, the main warning signs of type 1 diabetes:

• Toilet – going to the toilet more often
• Thirsty – being unusually thirsty
• Tired – feeling more tired than usual
• Thinner – losing weight without explanation

If any of these symptoms are present, seek medical advice without delay as a simple and immediate glucose test is the next step. Early recognition and testing save lives.

We are also calling for greater focus on introducing a nationwide early detection screening programme which would spot the early stages of T1D in children before symptoms develop.

Research into early detection screening for type 1 diabetes in the UK is establishing an improved clinical approach to diagnosing T1D before symptoms present. The ELSA study, funded by Breakthrough T1D, is the first national programme identifying children who are already in the early stages of the condition. Separate studies are investigating genetic risk factors, with some children being tested from just five days old using a heel prick. Together, these efforts could lead to a joined-up approach that helps identify children of all ages as early as possible, reducing emergency diagnoses and saving lives. It is vital that the evidence from research is used to develop a national early detection programme for every child at risk.

Tom Gordon MP for Harrogate and Knaresborough, and Chair of the All Party Parliamentary Group for Diabetes says: “Right now, there is no national early detection screening programme for type 1 diabetes, but clinical research in the UK is providing irrefutable evidence that early detection is key to preventing childhood deaths in DKA. We must build on this evidence and put prevention at the heart of how we diagnose and care for children.”

We will continue to raise awareness of the 4 Ts, increase access to early detection, and provide resources to both families and healthcare professionals. We are dedicated to making sure no family experiences the tragic loss of a child due to a missed diagnosis. We will continue to raise awareness of the condition, signs and symptoms and advocate for the introduction of a national early detection screening programme.