The father of a “bright and beautiful” girl who died 16 hours after a GP missed symptoms of type 1 diabetes is urging everyone to know the four key warning signs. Lyla Story became unwell just three weeks after her second birthday. Her parents, John and Emma, noticed she was tired, grumpy, and her nappies had become heavier, suggesting she was urinating more frequently than usual.
A couple of days later, John suddenly noticed Lyla appeared to have lost weight in her face. She was also asking for water and began vomiting. When she saw a GP, the youngster was displaying the classic 4T symptoms of type 1 diabetes: toilet, thirsty, tired and thinner.
John told the Express: “She was diagnosed with tonsillitis and prescribed antibiotics and children’s paracetamol. We were given safety-netting advice to say that if she hadn’t improved in the next 24 hours, call 111 or take it to children’s A&E.
“We were initially relieved, and it changed our perceptions of care for Lyla because you trust your doctor. Lyla passed away around 16 hours after that appointment. She didn’t even get 24 hours.”
Lyla died in her sleep. Tests at the hospital revealed she had undiagnosed type 1 diabetes and was in diabetic ketoacidosis – a life-threatening emergency that happens when a lack of insulin causes harmful substances called ketones to build up in the blood.
Her HbA1c level (which measures average blood sugar over the last two to three months) was 89, more than double the threshold for a healthy child. Lyla also had a gastrointestinal bleed and Covid-19, as well as tonsillitis.
Type 1 diabetes is an autoimmune condition that occurs when the immune system attacks and destroys insulin-producing beta cells in the pancreas. It is not caused by eating too much sugar, and around 90% of sufferers have no family history of the condition.
After Lyla’s death, the Royal College of GPs issued a bulletin to its members reminding them to consider type 1 diabetes in children. Hundreds of babies and young children like Lyla are becoming seriously ill each year, according to Diabetes UK.
In the 12 months to March 2025, some 902 children aged 15 and under were diagnosed while in diabetic ketoacidosis in England and Wales. National Paediatric Diabetes Audit data show the number of children diagnosed with type 1 in DKA rose from 20% in 2017/18 to 28% in 2024/25, with the highest rates (33%) among children under five.
John is determined to stop other families from going through such trauma and gathered more than 120,000 signatures on a petition calling for increased use of finger-prick blood glucose tests whenever someone presents with the 4Ts.
He added: “We need to make sure that there’s awareness of the 4Ts among the general public and healthcare professionals. That is critically important because you can plant the seeds in the mind of a general practitioner and say, ‘Look, these are classic symptoms of type one diabetes’, and demand the test.”
Lyla was born five weeks prematurely in April 2023 but grew into “a strong, beautiful, bright girl” who loved animals, painting and being outdoors, John said.
He added: “She was fit as a fiddle, clever, articulate for her age. And she was just adorable. Our beautiful little princess. Losing Lyla shattered our world. No family should have to experience the devastating loss we have.
“When a person is presenting with any one of the 4Ts, it’s a ticking time bomb and every minute matters. Type 1 diabetes is life-changing, but it should never be life-ending.”
Diabetes UK chief executive Colette Marshall said: “This World Diabetes Day (Saturday, November 14), we’re urging everyone to learn the 4Ts and share the signs with others.
“If a child shows any one of these symptoms, particularly if it seems unusual for them, the message is simple: think type 1 diabetes. A simple test could make all the difference – and it could even save a life.”
This story originally appeared on Express.co.uk
