The sad story of the daughter of John Story featured on BBC News nationally on Wednesday 17th September. He feels compelled to express his growing concern following his email campaign. The number of “Deleted Without Being Read” receipts is deeply troubling, especially given that this communication relates to the preventable loss of our 2-year-old daughter. Her death should never have happened, and every unread message feels like another missed opportunity to acknowledge the urgency and gravity of this issue. We need as much help as possible to make a positive change in the UK regarding Type 1 Diabetes.
John Story is in the process of sending an email to all GP Surgeries, Professionals, Local Authorities and Academics in the UK . He has also sent a copy of the email to Amanda Doyle, National Director for Primary Care and Community Services for her urgent attention. He has also met with Dr. Claire Fuller and Clare Hambling at Wellington House, NHS England, London, and discussed what is outlined below:
I’m reaching out to you because we urgently call upon your help urge the Prime Minister and the Health Minister of the United Kingdom to introduce and legislate Lyla’s Law — a policy that mandates testing for Type 1 Diabetes in babies, toddlers, children and adolescents as a routine part of medical assessments at the point of care, when displaying any symptoms of the 4 T’s (Toileting, Thirst, Tiredness and Thinning), in line with NICE Guidelines NG18.
Why We are Campaigning for Lyla’s Law:
Our daughter, Lyla Story, at just 2 years of age — bright, caring, sharing, full of life, able to count into her twenties, bounce on her trampoline, and dance every day.
On May 3rd, 2025, she tragically passed away in her sleep — less than 16 hours after being seen by a GP.
The morning before, she had been taken to the doctor by my wife (Lyla’s Mother) and my mother (her grandmother), and they advised the GP of several worrying symptoms:
- More wet nappies
- Lethargy and extreme tiredness (she fell asleep during the appointment).
- Loss of appetite, but drinking lots of fluids and she was even asking for water
- Vomiting multiple times (including at the surgery and my mother pointing out that it was the third time that morning), which was uncharacteristic for Lyla
- A large bowel movement 3 nights before her appointment and none since
- Uncharacteristic quietness (she stopped talking) and lack of energy
- Weight loss overnight.
Despite these concerning signs, the GP diagnosed her with Tonsillitis, prescribing antibiotics, and to keep giving Lyla children’s paracetamol. The GP advised my wife to monitor her and seek further care only if she did not improve in 24 hours.
Lyla passed away within 16 hours in her sleep next to my wife.
The cause of death was undiagnosed Type 1 Diabetes, which led to Acute Diabetic Ketoacidosis (DKA) and a gastrointestinal bleed. Lyla did not display any signs of Diabetes in the weeks leading up to her death However, the GP did not detect that Lyla also had Covid-19, which accelerated her Diabetes symptoms rapidly, causing her immune system to break down quicker.
Young children are often unable to express or describe their symptoms. It is therefore crucial that General Practitioners take the time to thoroughly assess all presenting signs and symptoms, leaving no room for assumptions.
Had her symptoms been more thoroughly investigated — even a simple urine test could have revealed dangerously elevated levels of ketones. A timely diagnosis would have resulted in an urgent referral, as required by NICE Guideline NG18, and Lyla would be alive today, managing her condition safely.
When hospital staff performed blood tests while trying to resuscitate her, Lyla’s HbA1c level was 89 — more than double the normal range (42–43). Her ketone level was 6 — double the threshold of medical danger.
Our daughter was failed by a system that too often overlooks the signs of Type 1 Diabetes in very young children.
This is far from an isolated incident. Children are still being misdiagnosed, sent home, and tragically losing their lives, all due to the lack of simple routine diabetes testing during GP visits. Lyla’s condition went undetected, even though her symptoms were far more severe than those of tonsillitis. If simple tests like a urine dip and finger prick had been mandatory for any signs of the “Four T’s” (Toileting, Thirst, Tiredness, and Thinning), and if NICE Guidelines NG18 had been properly followed, she and so many others might still be with us. Instead, we find ourselves visiting her grave, trying to stay strong for our four-year-old son.
So far, I have received over 250 emails from brave parents of children diagnosed with Type 1 Diabetes. Only two families have stated that their child was diagnosed at the initial point of contact with their GP, the rest have been admitted to hospital in DKA stage and near death.
I am currently writing to all GP Surgeries in the United Kingdom for the following request to enquire whether all of their practice surgeries “currently stock or display the following items:
- Blood glucose monitoring kits
- Urine dip test kits for ketone detection
A poster illustrating the “4 T’s” of Type 1 Diabetes (Toileting, Thirst, Tiredness, Thinning) – See attached. These can be printed out or ordered through the following link – The 4Ts Poster (download only) – Diabetes UK Shop”
Lyla’s Law would ensure:
- Routine Type 1 Diabetes testing (urine and/or blood) in babies, toddlers, children, and adolescents, during medical consultations, particularly where symptoms warrant it
- Greater awareness and adherence to existing NICE guidelines among healthcare providers
- The protection of vulnerable children who cannot speak for themselves.
We also believe that Type 1 Diabetes information should at least be in the “Red Book” for babies, Health Visitors need to give advice around the four “T’s”, Education is needed in primary health settings, and testing for antibodies is desperately needed, so the NHS can pick up those at higher risk and have surveillance on them, preventing serious cases like Lyla’s from ever occurring again.
Our Local Authority have unanimously passed a motion to write to the Prime Minister and the Health Secretary urging this law to be passed at a Full Council Meeting. They have sent a global email to all staff, fully supporting the campaign with a link to the petition. We please urge you to do the same. This is not about political persuasion. It is about much-needed change and education in primary care settings.
Help us make sure no more children are lost due to missed or delayed diagnosis of Type 1 Diabetes. Let Lyla’s name stand for change.
Our daughter deserved better. If her story can save even one life, then her legacy will live on.
A link to the petition to make change and save the lives of children is here. Please sign and share it, far and wide: https://petition.parliament.uk/petitions/728677
#LylasLaw #TestDontGuess