Family calls for new "Lyla’s Law" after toddler’s death from undiagnosed diabetes
Lyla was just two years old and had seen a GP less than sixteen hours before she died in her sleep
A family from Hull is calling for routine diabetes testing for children after their daughter Lyla Story died suddenly from undiagnosed Type 1 Diabetes.
Lyla was just two years old and had seen a GP less than sixteen hours before she passed away in her sleep.
"I felt something cold on my back. I thought it was a milk bottle, but it wasn't. It was her arm and she was already gone"
Her parents say her symptoms—like tiredness, drinking lots of fluids and more wet nappies—were missed, and easy tests could have saved her life.
They’re urging the government to introduce Lyla’s Law, which would mean every child with signs of the "Four T’s"—toileting, thirst, tiredness and thinning—is tested for diabetes at the point of care.
Lyla's dad John Story said:
" I have launched Lyla's law which would ensure routine type one diabetes testing. So that's urine, blood, and babies, toddlers, children and adolescents. During medical consultations where symptoms warrant it.
"People had started contacting me saying, this happened to our child too. I thought this is clearly a systemic issue going on here. And what you've got to be mindful of as well as young children are often unable to express or can describe the symptoms. So GPs have got to take the time to thoroughly assess and there needs to be greater awareness and adherence to existing NICE guidelines."
"Education needs to be mandatory in primary care settings."
John's petition for Lyla's law has already got 36 thousand signatures.
He's now waiting for a meeting with the health minsiter.
The Department of Health and Social Care has been contacted to comment.