A mum is trying to “shatter the taboo” of talking about brain donations after the tragic death of her daughter.
Five-year-old Olivia Gregory, from Wickford, was diagnosed with a terminal brain tumour called diffuse intrinsic pontine glioma last June when she was just four years old.
Her parents, Clare and Tony, were given the devastating news it was incurable and Olivia passed away in June.
Now Clare wants to open up the conversation about donating brains for research in the hope of one day saving other families from similar heartache.
A video of her and another parent talking about their daughters’ brain donations was shown at The Brain Tumour Charity’s Nurses and Allied Health Professional Conference yesterday.
Clare is sharing her story to help The Brain Tumour Charity raise awareness about how vital brain donation is for research.
“We don’t call it a donation – we call it a gift – as it’s the greatest gift a parent can give,” Clare told the Mirror.
“Gifting Olivia’s brain is a huge comfort as she is still leaving her trace on the world.
“No one once asked me or even mentioned it was a possibility and I totally understand it’s not for every family, but I hope sharing my story gives more health professionals the confidence to ask the question.
“It’s too late for my daughter but donating her brain for research may help other children in the future.
“It gives me a glimmer of hope.”
Sarah Lindsell, chief executive of The Brain Tumour Charity, said: “We are all very touched by Olivia’s heart-breaking story and so grateful to Clare and Tony for sharing it to highlight how vital brain donation is for research into brain tumours – the biggest cancer killer of children and under-40s in the UK.
“And we hope our Nurses and Health Care Professionals Conference helps to empower more health professionals to trust their instinct and expertise in when it feels right to broach the subject of brain donation with parents and patients.”