Juicebox Podcast: Type 1 Diabetes

Episode #1641 – Lyla's Story

Host: Scott Benner
Guest: John Story
Date: October 1, 2025

Episode Overview

This deeply moving episode centers on the tragic story of Lyla, a vibrant two-year-old girl from England who died suddenly from undiagnosed type 1 diabetes (T1D) and diabetic ketoacidosis (DKA). John Story, Lyla’s father, shares intimate details of her life, the days leading up to her passing, the aftermath, and his mission to ensure no other family experiences what they have. The conversation is raw, emotional, and blends personal pain with advocacy, aiming to spark change in pediatric diabetes screening and awareness.

Key Discussion Points & Insights

Introducing John and Lyla

• [01:53] John introduces himself as Lyla’s father, from Kingston Upon Hull, UK. He expresses gratitude for the podcast and warns that sharing his story is still very raw.
• [02:53] He paints a picture of Lyla: advanced for her age, loving, compassionate, had a sassy, independent side, and showed early intelligence.
  • “She was kind, caring, sharing. She loved all creatures... She was very independent... had a ‘don’t give a sh1t attitude’... she got that from me.” – John [03:20]
• Lyla had just turned 2 when symptoms began: she had rosy cheeks, seemed to be teething, and became increasingly tired and lethargic.

The Rapid Decline and Missed Diagnosis

• Symptoms escalated: more wet nappies/diapers, sudden weight loss, lethargy, vomiting, increased thirst, becoming non-verbal.
• [06:59]
  • “I am the biggest scaredy cat when it comes to my children… but for some reason, I just said, ring the doctor. She needs to get to doctors.” – John
• Doctor visit: Lyla’s symptoms (vomiting, no bowel movement, excessive thirst, weight loss) were misattributed to tonsillitis; prescribed amoxicillin and paracetamol.
• That night, John finds Lyla cold and lifeless—she had passed away in her sleep.
  • [10:55]
    • “I moved Lila because I thought she was sleeping… I felt something cold against me...she was freezing, she'd already gone.” – John

Processing Loss & Systemic Issues

• [12:27] John expresses devastation and highlights how misdiagnosis of T1D, especially in young children, is common.
  • Scott shares his own daughter’s near-miss diagnosis story.
  • “We just happened to have a moment where it just struck us...she was probably 24 hours away from where your daughter was.” – Scott [13:10]
• Many parents are told their children are simply overprotected or that T1D can’t happen without family history, both mistaken beliefs.
• Catastrophic statistics:
  • Of 220 emails John has received from UK families, only 2 children were diagnosed with T1D at their initial GP visit; most were diagnosed late, in critical care. [15:44]
  • "A little finger prick cost pennies—getting diagnosed in critical care costs hundreds of thousands," John argues, stressing prevention. [20:44]

Family Coping & Talking to Siblings

• John's family dynamic: met his wife Emma online, two children (Jack, 4, and Lyla, 2).
• After Lyla died, Jack had questions about her, which John and Emma explained in gentle, imaginative terms.
  • [25:11]
    • "Before she went up to heaven with the angels, she told us something...she’s left mummy her eyes. She’s left daddy her heart, and she’s left you her courage." – John
• Jack believes Lila left him her courage, and their daily rituals help keep Lyla’s memory alive.
• Emma, usually the "crier," now struggles with anger at the healthcare system’s failings. [24:43]

Systemic Healthcare Problems

• John critiques the UK’s NHS: underfunded, overstretched, often reduced to rushed, transactional experiences.
  • "The NHS is a wonderful system, but I genuinely think it's broken because we haven't got enough infrastructure... that's how long you are in with the doctor now—on average, seven minutes." – John [29:02]
• Doctors missing the 4Ts of T1D (toilet, thirsty, tired, thinner) because appointments are too short, focus on “most obvious” symptom.

From Grief to Advocacy: Lila’s Law

• John launches "Lila’s Law" campaign, pushing for:
  • Routine diabetes testing (urine and blood sugar) in children with any of the 4Ts.
  • Greater practitioner adherence to diabetes guidelines.
  • T1D info included in the UK “Red Book” (the health record given to every baby).
• Education is urgently needed: most GPs diagnose just one case of T1D in a career; public knowledge of critical symptoms is low.
  • "The 4Ts is a wonderful concept...but knowledge...is quite a tribal thing in essence...only people who know about it are those affected directly." – John [36:34]

Community & Support

• Social media (especially TikTok, Facebook) and T1D community have been a lifeline for John.
  • "When I went to Parliament...I remember seeing people asking, are you scared?...I just said, no. I'm standing on the shoulders of 400,000 T1D giants with Lyla holding my hand." – John [46:26]
• Mentions the ELSA study (early detection/surveillance for autoimmune conditions), but current programs don’t cover youngest children (like Lyla).
• John is in touch with other bereaved families and T1D advocates and hopes to bring more together for greater impact.

Life After Loss and Ongoing Campaign

• The family keeps Lila’s memory alive with rituals, gardening, and daily greetings.
• John channels his grief into keyboard advocacy (4,000 emails to health professionals; positive change as clinics respond).
  • "If Lila's legacy can save just one life, she's doing all right." – John [52:20]
• Fundraising and events for diabetes research/charities; John is planning a 10-mile awareness walk between two local rugby stadiums. [53:25]
• The petition for Lila’s Law is at 21,250 signatures, aiming for 100,000 so Parliament must debate it.
  • “It’s not just for me...it’s to advocate for change to make sure no child ever goes through what Lila's been through again.” – John [60:01]

Notable Quotes & Memorable Moments

“She was lovely, beautiful...she got all the caring and compassionate side from her mother...she was very independent and had a ‘don’t give a sh1t attitude’...she was adorable and wouldn’t hurt a fly.”
– John, [03:20]

“I said, ‘ring the doctor. She needs to get to doctors.’”
– John, [06:59]

“I moved Lila because I thought she was sleeping… I felt something cold against me...she was freezing, she’d already gone.”
– John, [10:55]

“We just happened to have a moment where it just struck us...she was probably 24 hours away from where your daughter was.”
– Scott, [13:10]

“A little finger prick cost pennies—getting diagnosed in critical care costs hundreds of thousands...money means nothing when you’re saving your child...”
– John, [20:44]

“Before she went up to heaven with the angels, she told us...she’s left mummy her eyes, daddy her heart, and you her courage.”
– John, [25:11]

“The NHS is a wonderful system, but I genuinely think it’s broken because we haven’t got enough infrastructure... on average, that’s how long you are in with the doctor now—seven minutes.”
– John, [29:02]

“[The 4Ts] is a wonderful concept...but knowledge of the 4Ts is quite a tribal thing in essence...only people who know about it are those affected directly.”
– John, [36:34]

“When I went to Parliament...I'm standing on the shoulders of 400,000 T1D giants with Lyla holding my hand.”
– John, [46:26]

“If Lila’s legacy can save just one life, she’s doing all right.”
– John, [52:20]

“It's only rare until it happens to you... Type 1 diabetes does not discriminate. It doesn't care if you're black, white, pink, yellow, or brown... if it wants you, it'll get you.”
– John, [59:19]

Timestamps for Important Segments

• [01:53] – John introduces himself and Lyla.
• [03:20] – Lila’s personality and story.
• [06:59] – Noticing symptoms, decision to see a doctor.
• [10:55] – The night of Lyla’s death.
• [12:27] – The aftermath and shock.
• [15:44] – Statistics on misdiagnosis; John’s campaign begins.
• [20:44] – The cost (in all senses) of a missed diagnosis.
• [25:11] – Explaining Lyla’s death to her brother Jack.
• [29:02] – Issues in the UK healthcare system.
• [36:34] – Importance and lack of public/professional knowledge about the 4Ts.
• [46:26] – Support from the T1D community and Parliament visit.
• [52:20] – Family’s advocacy gains traction.
• [53:25] – Upcoming awareness walk/fundraising.
• [55:00] – Lyla’s Law petition and systemic change.
• [59:19] – Call for universal awareness; T1D can affect anyone.

Takeaways & Calls to Action

• Awareness saves lives: Recognizing the 4Ts (Toilet, Thirsty, Tired, Thinner) and checking blood sugar in symptomatic children, even via a simple finger prick, can prevent tragedy.
• Advocacy is urgent: Greater awareness among both healthcare professionals and the general public is desperately needed. Routine testing and education can save lives.
• Community matters: The T1D community, both online and in advocacy organizations, is supportive and a source of strength for families facing tragedy.
• Lila’s Law: John’s petition aims to make routine diabetes screening for children the norm in the UK. UK citizens are encouraged to sign and share.
• Grief to Action: John’s ongoing advocacy through public speaking, social media, email campaigns, and events is turning his family’s grief into a force for positive change.

Connect & Learn More

• Lila’s Law petition: Open to UK citizens until December. (Details and links available on the Juicebox Podcast website and show notes.)
• Find John Story: Social links on his Facebook, TikTok, Twitter/X (details to be provided by John to Scott).
• Support T1D Awareness: Share the episode, know the 4Ts, and spread the word in your communities.

“If Lila's legacy can save just one life, she's doing all right.”
– John Story, [52:20]

This episode stands as a powerful, emotional call for awareness, earlier detection, and systemic change in childhood T1D diagnosis—anchored by the enduring love of a family determined to keep Lyla’s memory alive through advocacy.