Just seen a 'contract' issued by a #NHS team to a child with #T1Diabetes- that to keep their Insulin Pump- you must have 70% Time In Range.
Firstly? It's illegal to do so
Secondly? That's not even clinically logical
Importantly? Healthcare is about humanity
For clarity- this is NOT an ask from @NHSEngland
Just a reminder -at this stage.
Please don't do silly things.
Also...am still around.
Thanks.
#gbdoc
@BT1DUK@DiabetesUK
Please, everyone, whether Type 1 Diabetes is part of your family’s daily life or not. I’m asking from the heart. Use the link below to urge your MP to attend the Parliamentary debate on 9 March.
To the wider public. Please don’t assume this will never touch your life. Statistically, it will affect someone you know and love. Your voice matters. Your action matters.
Do the right thing. Make a difference.
For Lyla x #LylasLaw 💛💝🌻
For those that came so close to death.
Please.
https://t.co/YlYOuu8CAK
While on vacation, this man took the time to help guide this confused swan back to the water below.
The bird's reaction when he is back on the water is pure joy. 🥹
Hull to Liverpool Walk for Lyla’s Law begins 13 April!
I’m walking in memory of my daughter Lyla, who died at the age of 2 from undiagnosed Type 1 Diabetes last May, and for the thousands of people in the UK every year who only get diagnosed at the point of critical care.
I urgently need a support vehicle to travel with us. Donated, branded, and carrying a QR code for donations would be incredible! @followers, to help reach far and wide, in order to gain support, please could everyone repost this!
If you or your company can help, please reach out.
Every mile is for Lyla. Every share protects another child.
#LylasLaw #Type1Diabetes #TestDontGuess @BT1DUK@DiabetesUK
ANNOUNCEMENT!
Open invite to the general public, family, friends, businesses and any other organisation. Please share away.
I’m reaching out to you all to invite you to a special Family Fun Day at Goodfellowship Inn, Cottingham Road, Hull, HU5 4AT, on Saturday, August 1st, 2026, 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 testing for Type 1 Diabetes in babies, toddlers, children and adolescents when displaying any symptoms of the 4 T’s (Toileting, Thirsty, Tiredness and Thinning).
PROCEEDS FROM THIS EVENT ARE GOING TO HEY Kids Support Group, Hull & East Yorkshire’s T1D Voluntary Support and Advocacy Group.
The day will hopefully include a chocolate board, tombola, raffles, an auction, entertainment and much more. 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:
• 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 was the third time that morning), which was uncharacteristic for Lyla.
• 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.
Our daughter was failed by a system that too often overlooks the signs of Type 1 Diabetes in very young children.
Lyla isn’t an isolated case.
Lyla’s Law would ensure:
• Routine Type 1 Diabetes testing (urine and/or blood) in babies, toddlers, children and adolescents during medical consultations, 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, and many others deserve better. If her story can save lives, 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.
We hope to see you there! Xx
#LylasLaw 💛💝🌻
#TestDontGuess
#ProtectOurChildren
To the friends & families of the Rob & his wife, and on behalf of the majority of Americans, I’m so sorry this disgusting felon posted such a disrespectful deplorable evil cruel ruthless statement.
I’m embarrassed to be an American.
Good morning everyone. Awful lot of admin yesterday and pretty much got through it all. Thank you all so much for your stories, it’s hard to do for you but keep them coming, as there’s strength in numbers. Thank you for your messages of support too.
One thing that has come to my attention is the clip on @BBCBreakfast’s page has had over 502k views. If just 10% of the viewers signed the below petition, the target of 100000 signatures would be reach. Please people, for Lyla and many others, sign and share the petition x #LylasLaw 💛💝🌻 #thankyouforyoursupport #testdontguess #diabetes #fyp
https://t.co/IhwEYzRQtj