Family pay tribute to ‘darling little girl’ who died from undiagnosed type 1 diabetes
The family of a two-year-old girl who died from undiagnosed type 1 diabetes earlier this year have paid tribute to their “joyful” daughter.
On May 3, 2025, Lyla Story tragically died in her sleep just 16 hours after being wrongly diagnosed with tonsillitis by a GP, even though she was presenting symptoms linked to type 1 diabetes, such as a higher number of wet nappies, extreme tiredness and increased thirst.
The toddler from Hull has been described by her family as a ‘caring, kind and beautiful’ little girl with the ‘biggest heart’.
Lyla was the loving daughter of John and Emma Story and the special sister of her older brother Jack Story.
She was full of life, independent and headstrong, and loved to paint, sing and colour in. Even at just two years old, Lyla’s intelligence shone through as she could count into her late 20s and knew all the nursery rhymes, with Twinkle Twinkle Little Star being her favourite.
Lyla adored all animals and shared a special bond with the family dog, Cooper. Her cheeky sense of humour would keep the family entertained, and she was always found giggling alongside Jack.
John said: “Lyla was the perfect blend of her mummy and daddy. She was bright, articulate, caring, sharing and kind.
“She was cheeky, independent, sassy and had her daddy wrapped around her finger. Her passing has devastated us, and all that knew her. There is a hole in our hearts that is irreparable.”
Lyla’s cause of death was undiagnosed type 1 diabetes, which led to acute diabetic ketoacidosis (DKA) and a gastrointestinal bleed.
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), while her ketone level was 6 – double the threshold of medical danger.
To honour their daughter’s memory and to safeguard other children going forward, her family has launched a petition advocating for Lyla’s Law.
This proposed law would legislate NICE Guideline NG18, to make routine diabetes testing mandatory for babies, toddlers, children and adolescents whenever any of the ‘4 T’s’ appear: Toileting, Thirst, Tiredness and Thinning.
The petition has now surpassed 100,000 signatures, meaning it will be scheduled for debate in Parliament. The family is urging continued support to keep momentum strong ahead of the deadline on Saturday, December 20. By signing and sharing, supporters can help ensure that no child’s type 1 diabetes goes undiagnosed.
As part of the campaign, John is also reaching out to GP surgeries and healthcare settings in the UK asking them to stock blood glucose and ketone urine dip test kits, display the ‘4 T’s’ Diabetes UK poster and share Lyla’s story and petitions across their networks.
John said: “Having received more than 300 heartbreaking emails and thousands of comments online, the systemic failings in GPs constantly ruling out type 1 diabetes without even testing before a child ends up being diagnosed in critical care must stop.
“Type 1 diabetes is an autoimmune condition that in most cases are brand new to a family. It does not discriminate. It does not care how old you are, whether it runs in families or not, your ethnicity or whether you are healthy or unhealthy.”
He added: “Please do not treat this deadly condition with disdain. Please sign the petition, to safeguard you, your friends, your children and your grandchildren.
“Most importantly, do it for the love of Lyla, and many others that are unnecessarily diagnosed at near death stage, or in Lyla and other cases, death.”
For more information about the dangers of type 1 diabetes in babies and infants, visit: https://www.youtube.com/watch?app=desktop&v=1DkLDF_Zc_s.
To support the Lyla’s Law campaign, sign the petition here: https://petition.parliament.uk/petitions/728677.