Open invite to all family, friends, businesses and any other organisation. Please share away.
Good afternoon, I hope this message finds you well.
I’m reaching out to you all to invite you to a special Family Fun Day at The Spotted Dog Public House, 575 Inglemire Lane, Hull, HU6 8SW, on Sunday, August 10th, 2025, from 12pm until closing.
This event is being held in memory of our daughter, Lyla Story, and in support of the #LylasLaw Campaign — calling for routine screening for Type 1 Diabetes in babies, toddlers, and young children.
The day will include a chocolate board, tombola, raffles, and entertainment provided by The Society of M.I.C.E. If you're able to donate a raffle prize, it would be greatly appreciated — but your presence and support are what matter most.
Why We’re Campaigning for Lyla’s Law:
Our daughter, Lyla Story, was just two years old — bright, caring, sharing, full of life, counting into her twenties, bouncing on her trampoline, and dancing 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:
• Excessive 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 was the third time that morning), which was uncharacteristic for Lyla.
• Rapid weight loss overnight.
• A large bowel movement 3 nights before her appointment and none since
• Uncharacteristic quietness (she stopped talking) and lack of energy
Despite these concerning signs, the GP only 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 didn’t 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 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 high levels of ketones. A timely diagnosis would have resulted in an urgent referral, as required by NICE Guideline NG18, and Lyla would likely 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 isn’t an isolated case. Diagnoses continue to be missed, children sent home, and tragically pass away — all due to a lack of diabetes screening. Lyla’s diagnosis was missed despite presenting symptoms much worse than Tonsillitis. Had diabetes screening be made mandatory, and NICE Guidelines been properly followed, she, and many others would still be here today. Instead, we are visiting her in a cemetery.
Lyla’s Law would ensure:
• Routine Type 1 Diabetes testing (urine and/or blood) in babies, toddlers, and young children 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.
Our daughter deserved better. If her story can save even one life, then her legacy will live on.
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.
#LylasLaw
#TestDontGuess
#ProtectOurChildren
With warm regards,
Mr. John Paul Story FdSc Rehabilitation Work (Visual Impairment)
Email:
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Tel: 07549167459
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