Well-wishers raise £50k to help Sheppey family after 6-year-old's devastating diagnosis

-Credit: (Image: Joe Smith)
-Credit: (Image: Joe Smith)

The parents of a six-year-old girl are trying to make as many memories as possible after their daughter was diagnosed with an inoperable brain tumour. Joules Smith was recently diagnosed with a diffuse midline glioma - an aggressive brain tumour - and is expected to have only nine months to live.

Her parents, Joe and Elisha Smith, were told the devastating news that there were no effective treatments for this type of brain tumour. The couple, who live in Minster on Sheppey, had taken Joules to Medway hospital on May 10 after a few days of noticing some slight changes in her balance, eye and head movements, and headaches.

Tests at the hospital came back normal and the family was told "everything had come back fine" before being sent home. But, after getting home and seeing Joules' symptoms worsen, they returned to the hospital the following day and insisted on her having a CT scan which, later the same day, revealed she had a mass in her brain.

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The Minster Primary School pupil was rushed to London's King's College Hospital. There, she had an MRI scan.

"It was that scan which revealed the worst possible news," dad Joe said. "That it was a diffuse midline glioma, which is as bad as it gets, and is terminal."

Joules at Walt Disney World Resort Florida last year with her mum and dad, Elisha and Joe Smith -Credit:Joe Smith
Joules at Walt Disney World Resort Florida last year with her mum and dad, Elisha and Joe Smith -Credit:Joe Smith

Young Joules subsequently had a shunt put into her brain to help ease the pressure in her head which, her heartbroken dad says, "seems to be helping". After a week at King's, the family returned home and was referred to The Royal Marsden Hospital in Surrey, where she is now undergoing radiotherapy to help ease her symptoms.

She started radiotherapy last Monday (June 3) and the 13 intense sessions will finish on Wednesday, June 19. Joules will then have a new cancer drug known as ONC201.

"Once these are done, that’s all the treatment she can have," Joe, 33, said. "Then there isn’t anything else to offer, so she will slowly get worse."

He added: "She is doing so well and has been so brave. As parents, this is the hardest thing to watch and it’s breaking our hearts every single second of the day having to watch her go through this.

"She really is the most beautiful, kind-hearted little girl. She is the funniest little thing; she loves doing Tik Toks - some of which have even gone viral with millions of views - she loves a bootfair every Saturday, and she is an amazing dancer.

"What is happening to her is just so cruel, but we want to share our pain to raise awareness. If you ever think something is wrong with your child, get them checked."

After spending her 6th birthday in hospital, Joules is now back at home with her parents and they "want to keep it that way until the end".

Well-wishers have raised more than £50,000 for Joules and her family in a matter of days through an online fundraising page set up by their close friend Kirk Norcross. Kirk said: "The Smith family's whole life has come to an absolute standstill. Their world has been rocked and their hearts have been torn out.

"Their life has now been put on hold; they both are unable to work as much as they need to as they both want to spend every second with her, and all they are trying to do is provide an amazing life for Joules before she sadly leaves us. The reason I’ve set set up this GoFundMe page is to be able to give some kind of support to the whole family to make their life a little bit bearable."

Princess Joules at Florida's Walt Disney World Resort in October 2023 -Credit:Joe Smith
Princess Joules at Florida's Walt Disney World Resort in October 2023 -Credit:Joe Smith

Aside from the fundraising page, a number of fundraising events have been organised to raise more money for the family. On Friday Minster Playgroup, where Joules attended before she started school, had a pyjama day and raised about £500.

Other fundraisers include a charity football match at Sheppey United FC's Holm Park in Halfway on Friday, June 21; and A Day For Joules family charity event for the pupils and families of Miss Lauren's Dance Company on Sunday, June 23.

Joe said: "We don’t know how much time we have, but we will make it the best we can for Joules. Thank you to everyone who has been donating and helping us in this terrible situation.

"It’s not just affecting us, but everyone who knows and loves her." To make a donation, click here.

What are the symptoms of a Brain Tumour?

According to Brain Tumour Research, the symptoms of a brain tumour will depend upon which part of the brain is affected. The most common symptoms are caused by an increase in pressure in the skull caused by the growth of a tumour in the brain.

Some of the common warning signs of a brain tumour 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.

To find out more, visit the Brain Tumour Research website here.

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