Lyla from Hull had several symptoms of type 1 diabetes, but was not given a urine test or finger prick and died that night
A heartbroken Hull family who lost their “bright” and “joyful” little girl are urging people to sign a petition to ensure any child with symptoms of type 1 diabetes is given a simple, life-saving test. Lyla Story was two years old when she passed away on May 3 this year, less than 16 hours after she was seen by a GP.
Her dad, John Story, launched the petition named “Lyla’s Law” in memory of his little girl. He described her as a bright and sweet-natured toddler who could already count past 20 and “wouldn’t hurt a fly”.
John said: “Her diagnosis was missed. At the end of the day, had she just had a simple urine dip in her nappy, that would have provided the warning she had ketones in her system.
“Once they had that warning, they could have simply finger pricked her and would have known right away, ‘Get that child to hospital, she is a type 1 diabetic.’ And she would be alive today.”
Lyla was diagnosed with acute tonsillitis when she was taken to the GP by John’s wife, Emma, and his mother. “Emma mentioned she was having more wet nappies, she is drinking more, she is asking for water – what two-year-old asks for water?” John said.
He added: “She was lethargic, she was not being her usual self, she was falling asleep at the appointment as well, she had been sick three times that day which is a sign of diabetes in a young child. Lyla was not a sickly person normally.
“She had also thrown up in the doctor’s surgery as well. My wife also mentioned she had lost weight overnight, which she had. Once we saw the weight loss going on, we thought we need to get her to the doctor.”
Tragically, Lyla passed away that night. At an inquest into Lyla’s death held in September, Senior Coroner Prof Paul Marks said she died of natural causes due to diabetic ketoacidosis (DKA), the BBC reported. She also had a gastrointestinal bleed and Covid-19.
John said: “We are angry. Emma is more consumed with anger than I am, because she was at the appointment.”
While on bereavement leave from work, John has thrown himself into campaigning in the hope of saving children’s lives. “Lyla deserved better. If her story can save even one life, her legacy will live on,” he said.
The petition, linked here, currently has 60,000 signatures and needs 100,000 before it is debated in Parliament. With a deadline of December 20, the clock is ticking down.
Lyla’s Law would mandate routine diabetes testing for babies and children with symptoms of the ‘Four Ts’ which are red flags for diabetes, in line with NICE Guideline NG18. The Four Ts are:
- Toileting
- Thirst
- Tiredness
- Thinning
The vast majority of children diagnosed with type 1 diabetes have no family history. It is not yet known what causes it, but childhood infections may be a risk factor.
John said he has received hundreds of emails from parents of children with type 1 diabetes. Almost all of them told him their children were only diagnosed once they were “near death” and in a state of diabetic ketoacidosis, he said.
He added: “It is so crucial for this petition to be signed. Lyla was not just a daughter of Hull, she was not just our daughter, she was a daughter of Yorkshire, she was a daughter of England, she was a daughter of the world, and she was wonderful.
“She was bright, articulate. She could count well into her twenties. Beautiful – I would say that because I’m her dad, but she actually was beautiful – and she wouldn’t hurt a fly.
“I can’t believe how badly she was let down by the system.”