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Girl, 12, who was diagnosed with a brain tumour during a visit to Specsavers dies

A ‘brave and beautiful’ 12-year-old girl who was diagnosed with a brain tumour during a trip to Specsavers died before her family could raise £200,000 for treatment not available on the NHS

Grace Kelly, from Oadby, Leicestershire, passed away on Saturday 13 August with her family around her.

She was diagnosed with stage four glioblastoma multiforme in August last year at Leicester Royal Infirmary. 

An optician at a routine check-up in a Specsavers noticed swelling behind her eyes and she was referred to the hospital for tests. 

The 12-year-old had an eight-hour operation and chemotherapy and radiotherapy but the tumour unfortunately grew back.

Before she died, her family had tried to raise £200,00 for her to have pioneering life-saving immunotherapy in Germany, which was not available on the NHS, as she could not be treated in the UK.

Grace Kelly, from Oadby, Leicestershire, pictured, died on Saturday 13 August after a year of being treated for glioblastoma multiforme (GBM)

Grace Kelly, from Oadby, Leicestershire, pictured, died on Saturday 13 August after a year of being treated for glioblastoma multiforme (GBM)

Her mother Vanessa, 32, 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.’

Grace, pictured in hospital, went to a Specsavers last year for a check-up when an optician noticed swelling behind her eyes. An MRI scan revealed that she had a glioblastoma multiforme tumour the size of a 50p piece

Grace, pictured in hospital, went to a Specsavers last year for a check-up when an optician noticed swelling behind her eyes. An MRI scan revealed that she had a glioblastoma multiforme tumour the size of a 50p piece 

The 12-year-old had an eight-hour operation and several courses of radiotherapy and chemotherapy but a scan revealed that the tumour had sadly grown back. Pictured (L-R): John, Nathan, Vanessa, Grace and Marissa Kelly

The 12-year-old had an eight-hour operation and several courses of radiotherapy and chemotherapy but a scan revealed that the tumour had sadly grown back. Pictured (L-R): John, Nathan, Vanessa, Grace and Marissa Kelly 

The family of Grace, pictured, were trying to raise money for her to have immunotherapy in Germany

Grace's mother Vanessa said she finds it 'shocking' that the pioneering immunotherapy treatments are not available in the UK

Her devastated family then began trying to raise hundreds of thousands of pounds to fund pioneering treatment in Germany as she could not be treated in the UK. Pictured: Grace (left) and her mother Vanessa (right)

Vanessa said: ‘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.’

According to Brain Tumour Research, brain tumours kill more children and adults under the age of 40 than any other cancer.

Pictured: Grace's siblings Marissa and Nathan wear their Leicester City shirts in memory of their sister

Pictured: Grace’s siblings Marissa and Nathan wear their Leicester City shirts in memory of their sister

Grace, pictured with siblings Nathan and Marissa, died with her family around her on Saturday 13 August

Grace, pictured with siblings Nathan and Marissa, died with her family around her on Saturday 13 August 

The 12-year-old's parents were left frustrated by the lack of treatment options for her. Pictured: Grace's siblings Marissa and Nathan in their Leicester City shirts

The 12-year-old’s parents were left frustrated by the lack of treatment options for her. Pictured: Grace’s siblings Marissa and Nathan in their Leicester City shirts 

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

Grace's parents say there is a lack of funding for brain tumour treatment and want there to be more options available. Pictured: Grace

Grace’s parents say there is a lack of funding for brain tumour treatment and want there to be more options available. Pictured: Grace 

What is a glioblastoma multiforme? 

Glioblastoma (GBM), also referred to as a grade IV astrocytoma, is a fast-growing and aggressive brain tumour. It invades the nearby brain tissue, but generally does not spread to distant organs.

GBMs can arise in the brain de novo or evolve from lower-grade astrocytoma. In adults, GBM occurs most often in the cerebral hemispheres, especially in the frontal and temporal lobes of the brain. GBM is a devastating brain cancer that can result in death in six months or less, if untreated; hence, it is imperative to seek expert neuro-oncological and neurosurgical care immediately, as this can impact overall survival.

Symptoms

Symptoms vary depending on the location of the brain tumor, but may include any of the following:

Persistent headaches

Double or blurred vision

Vomiting

Loss of appetite

Changes in mood and personality

Changes in ability to think and learn

New onset of seizures

Speech difficulty of gradual onset

Source: American Association of Neurological Surgeons  

 

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