The mother of a Birmingham girl who died after contracting E. coli while she was on holiday is funding a cutting-edge study which she hopes will find a cure.
“Heather didn’t just die,” she said. “She suffered. It was a horrible, painful death.
“The most important thing for me is that there is a cure, or treatment out there, so there will be no more deaths.
“It’s been hard keeping the money for this long but I wanted to make sure it was used for the right project, and that it would make a real difference.”
The family had been on holiday in Dawlish Warren, Devon, when Heather contracted the infection.
She went on to develop hemolytic uremic syndrome (HUS) which led to brain damage and kidney failure.
After her death, Julie set up the Heather Preen Trust, and raised funds tirelessly in the years that followed.
The money raised will be used to provide a better understanding of why some children develop the disease and how it can be treated.
The funding is being managed by the charity Kidney Research UK.
Renowned paediatric nephrologist Dr Mark Taylor at Birmingham Children’s Hospital was Julie’s expert adviser and last year alerted her to the work of Dr Aoife Waters and Dr Sally Johnson, researchers who were seeking funds to run a potential randomised clinical trial into HUS.
It was what Julie had been waiting for.
They are undertaking a controlled trial of the drug Eculizumab, to include a genetic screening programme looking at DNA samples from patients who have developed HUS caused by E. coli.
The study will attempt to identify changes in genes that make certain proteins involved in the development of HUS so that they can better understand why some people react to E. coli by developing the disease.