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Dianne on the Groundbreaking partnership with The Brain Tumour Charity

Witney mother raises thousands for research after son, 10, died of incurable brain tumour

A woman from Witney in Oxfordshire whose son died of an incurable brain tumour is raising money for new research into improving survival rates.

Dianne Parkes’ ten-year-old son Joss died of a brain stem glioma, for which there is currently no hope of survival.

But now, she’s joined forces with the Brain Cancer Charity to help fund pioneering research which could provide some hope for the first time.

Speaking to ITV Meridian, Joss’ mum Dianne said: “He was the cheekiest little boy ever.

“He was full of fun, full of mischief. He’s still missed so much all these years later because he just made everyone around him smile, he just lit up the room.”

Courtesy of ITV News Website

Joss was diagnosed with a diffuse midline glioma at age four – but tragically his family were told there was no treatment that could save him and he had just weeks to live.

But Joss defied doctors and lived a further six years.

“I think with all the cancers you have some element of hope of ‘ok we’re going to get an operation’,” Dianne added.

“I can’t believe that that was my dream for my child to have his skull drilled into and to have the tumour removed, but they just couldn’t do it.

“To be told there is nobody or nothing in the world that can save your child don’t even bother to look, that was just so heartbreaking.

“And of course we looked.

“We did what all families would.

“You jump straight onto google and you start looking for cures, and there are none. And it breaks your heart. Over and over it breaks your heart.”

When Joss died, his parents set up Joss Searchlight, a charity to support other families and raise money to find a cure.

Dianne has partnered with The Brain Tumour Charity to help fund pioneering research to find better treatments for this type of cancer.

Through Joss Searchlight, £150,000 has been raised so far.

Cameron Miller from the The Brain Tumour Charity said: Historically there has been a lack of funding going to brain tumour research and as a result of that we now have a legacy where there aren’t enough effective treatments coming through and we aren’t able to treat these conditions as well as we can some other cancers.

“So we need to see an increase in the amount of research that is done and part of the way that we do this is partnering with people like Joss Searchlight and using that incredible amount of money that they’ve raised to fund effective new research to bring new treatments to patients.”

What is a diffuse midline glioma?

According to the Brain Tumour Charity, diffuse midline gliomas are the second most common type of primary high grade brain tumour in children.

They grow in the midline between the two halves of the brain. There are various treatment options but radiotherapy is the current standard.

In the UK, 20-30 children are diagnosed with a diffuse midline glioma each year. But tragically 90% of them die within 18 months of diagnosis

The five year survival rate is less than 1%.

Symptoms of brain tumours include-

  • Headaches: Frequent or severe headaches, especially if they are worse in the morning or wake you up from sleep

  • Nausea and vomiting: Persistent nausea and vomiting may be a sign of increased pressure within the skull

  • Vision problems: Blurred or double vision, loss of peripheral vision, or seeing flashing lights or colours

  • Seizures: New onset seizures in an adult, especially if they occur without a known cause or with a headache

  • Weakness or numbness: Weakness or numbness in an arm or leg or on one side of the face or body

  • Speech difficulties: Difficulty speaking, slurring words, or trouble finding the right words to say

  • Cognitive changes: Confusion, memory loss, and difficulty concentrating

Help us find a cure for rare brain tumours and give support today

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