Parents of an 11-year-old girl who was diagnosed with a brain tumor earlier this year are frustrated that they cannot access a “groundbreaking treatment” for her condition.
Grace Kelly of Oadby was attending an optician appointment with her mother, Vanessa, in August when she was unexpectedly referred for an emergency MRI scan.
Doctors found swelling on her brain, which after the operation was diagnosed as a Glioblastoma Multiforme brain tumor, and shortly after, she began a six-week course of radiation therapy and chemotherapy.
But shortly before treatment, Grace’s family received more bad news.
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“Just before her cancer treatment began, she had an MRI scan, which revealed that the tumor had grown back,” Vanessa said.
“I was crushed. Not only had it grown back, but another smaller tumor had also developed.”
The severity of the tumor type means that it grows rapidly and is more difficult to treat.
Health assistant Vanessa and her husband John, 42, began researching brain tumors and joined various groups online, desperate for more support, where they learned about immunotherapy.
Immunotherapy is a form of treatment that stimulates the body’s natural immune system to destroy cancer cells. However, there are no such treatments approved for the treatment of brain tumors available on the NHS.
Vanessa said: “A lot of people on our online groups have done that and seem to have been successful.”
“I find it shocking and frustrating that it is not available in the UK,” she added. “There is something that might help her, but we can not access it.”
That’s why Vanessa, 32, and John have set up a Just Giving site in hopes of raising £ 200,000 to access treatment at a clinic in Germany.
Although they know there is no cure for Grace’s tumor, her parents said they “do not want to give up”.
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The couple shared Grace’s story on their Just Giving page, saying: “Grace is our oldest child, she has two younger siblings who love her, she is their big sister.
“As a family, it has really hit us and has been hard to accept, it’s an emotional roller coaster of fear, pain, hope and love for our daughter.”
£ 200,000 would cover diagnostics and personal vaccines and treatments.
Vanessa said: “We have never asked anyone for anything and it feels strange to do this, but we need financial help to save our child.”
Brain tumors kill more children and adults under the age of 40 than any other cancer, but historically, only 1 percent of national cancer research spending is allocated to the disease.
Hugh Adams, head of stakeholder relations for cancer charity, Brain Tumor Research said: “This is such a devastating story and we’re so sad to hear about Grace’s terrible diagnosis.
“More needs to be done to develop treatments and improve outcomes for patients like Grace.
“We desperately need to increase investment in brain tumor research, as that is how we will find more effective treatments for brain tumor patients and ultimately a cure.”
You can support John and Vanessa by donating here.
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