A 12-year-old girl diagnosed with a brain tumour after a routine trip to the opticians has tragically died while her family battled to raise £200,000 for treatment unavailable on the NHS.
Grace Kelly went to Specsavers for a check-up when opticians discovered swelling behind her eyes in August 2021.
The schoolgirl was referred to Leicester Royal Infirmary where an MRI scan discovered she had a glioblastoma multiforme (GBM) tumour the size of a 50p piece.
Grace, of Oadby, Leicestershire, underwent an eight-hour operation and several courses of both radiotherapy and chemotherapy, but despite this gruelling treatment a scan revealed the tumour had grown back.
Her devastated family set about trying to raise hundreds of thousands of pounds to fund pioneering treatment in Germany, which is not yet available in the UK.
But today her heartbroken mother Vanessa, 32, revealed their “brave and beautiful” daughter had lost her year-long battle with the disease.
Grace sadly passed away on Saturday (13/8) with her family by her side.
Vanessa said: “Our brave and beautiful girl took on her cancer like a warrior, she never complained and always had a smile.
“Our perfect girl was polite, funny, brave, beautiful and smart.
“We were so lucky to have her as our daughter, and she was an amazing big sister to Marissa and Nathan. She will be missed by family and friends so much.
“All our hearts are shattered at the loss and we still can’t believe she has gone. She will always be with us.
“We had 12 amazing years with Grace but it wasn’t enough, we miss her already. I don’t know how we will go on without her. Fly high our angel Grace.”
Vanessa and husband John, 42, had been trying to crowdfund £200,000 to go to Germany for pioneering private immunotherapy treatment.
She added: “I find it shocking and frustrating that these pioneering treatments are not available in the UK.
“There is something that might be able to help but we can’t access it.
“We are shocked that the standard of care for brain tumours has been the same for the last 20 years.
“It’s so distressing knowing there’s no cure for what Grace had, but we don’t want to give up.
“There is such a lack of funding, and we desperately need more treatments available.”
Brain Tumour Research say brain tumours kill more children and adults under the age of 40 than any other cancer.
Hugh Adams, head of stakeholders relations at Brain Tumour Research, said: “We’re deeply saddened to learn that Grace has died from this devastating disease and our thoughts are with all those who knew and loved her.
“We are really grateful to Vanessa and John for working with us, as it’s only with the support of people like them that we’re able to progress our research into brain tumours and improve the outcome for patients like Grace who are forced to fight this awful disease.
“Brain tumours are indiscriminate. They can affect anyone at any time.
“Too little is known about the causes and that is why increased investment in research is vital.”
Anyone wishing to make a donation in Grace’s memory can visit: braintumourresearch.org/donation/donate-to-brain-tumour-research