Lyla’s Law: Wakefield and Dewsbury Young Diabetics group supporting family’s fight for change after a preventable tragedy
After the preventable death of a two-year-old girl, her family is campaigning for a law to ensure routine testing to spot type 1 diabetes early.
Today, World Diabetes Day, Wakefield and Dewsbury Young Diabetics, which offers support to families whose lives have been touched by diabetes, is urging people to sign a petition calling for a change in the law following the death of Lyla Storey.
In May this year, little Lyla, from Hull, died in her sleep just 16 hours after her mother had taken her to the GP with symptoms including more wet nappies, extreme tiredness and asking for water.
She was diagnosed with tonsillitis and given antibiotics, but later died while lying asleep next to her mother.
The cause of death was undiagnosed type 1 diabetes, which led to acute diabetic ketoacidosis (DKA) and a gastrointestinal bleed.
Her family say Lyla did not display any signs of type 1 diabetes in the weeks leading up to her death, and that the GP did not detect that Lyla also had COVID 19, which accelerated her type 1 symptoms rapidly and caused her immune system to break down quicker.
Other symptoms they reported to the GP included loss of appetite but drinking lots of water, vomiting multiple times, weight loss overnight, a large bowel movement three nights before her appointment and none since, uncharacteristic quietness and lack of energy.
Lyla’s family have now actively campaigning for Lyla’s Law, which would make routine diabetes testing (urine and/or blood) mandatory for babies, toddlers, children, and adolescents when any of the ‘4 Ts’ are displaying: Toileting, Thirst, Tiredness, Thinning, exactly as outlined in NICE Guideline NG18 during a GP visit.
They also want more information around type 1 diabetes to be included in the ‘red book’ for babies and more training for health visitors.
Rebecca Wilson, a trustee for the local charity Dewsbury and Wakefield Young Diabetics, said; “Lyla’s dad has been campaigning ever since she passed away – this only happened six months ago.
"My own son, Dylan, was diagnosed five years ago. He’s 10 now, but we didn’t know the signs, so he was unfortunately in DKA and we nearly lost him.
"I’ve made it my mission ever since to shout about the ‘4 Ts, until I’m blue in the face. If I can save even one family from going through what we did, i’ll feel it’s all been worth it.”
"There is a petition running to make testing mandatory when the symptoms are there and to raise general awareness so parents know the signs to look out for.”
Lyla’s grieving father said: “I’ve personally received over 275 heartbreaking stories and seen thousands of comments from families whose children nearly died from DKA.
"Just two were diagnosed at their first GP appointment. That’s not acceptable.”
"Our daughter was just two years old. Bright, joyful, and full of life.
"Lyla deserved better. If her story can save even one life, her legacy will live on.”
There is a deadline of December 20 for the petition to get 100,000 signatures so it will be discussed in Parliament.
So far, there have been more than 53,400 signatures.
To add your name and push for change, sign the petition here.
To find out more about Wakefield and Dewsbury Youth Diabetics visit their Facebook page here.
* Type 1 diabetes is caused by the immune system attacking cells in the pancreas that control blood sugar levels.
To find out more about symptoms and what to look out for, click here.