A LITTLE girl was given just nine months to live after her parents noticed she just “wasn’t herself”.
Joe and Elisha Smith took their daughter Joules, 6, to hospital after growing concerned over “a few little changes”.
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They were assured by doctors that nothing was wrong but decided to take her back the next day, trusting their gut instinct that something wasn’t right.
The family was given the devastating news that Joules had a “worst of the worst” brain tumour – and it was terminal.
The little girl sparked a sensation online as her dad Joe – a TikTok creator – posted videos of the two of them dancing on the app, in a bid to raise awareness around childhood brain cancer.
After being absent on social media for some time, Joe confirmed last week that the six-year-old had passed away on Monday, December 9.
Read more on brain tumours
In a video captioned “Joules we love you forever”, the dad said: “Our beautiful little dancing queen passed away in between me and Elisha in our bed.
“Joules has been an absolute inspiration to everyone and I’m so proud to be her dad.”
Joe first took to TikTok in May to reveal that little Joules had been diagnosed with diffuse intrinsic pontine glioma (DIPG).
This is a rare and fast-growing tumour that develops in an area of the brainstem known as the pons.
Tumours of this sort currently kill over 90 per cent of children who have it within 18 months of diagnosis, Children with Cancer UK states.
“This is going to be the hardest video I’ve ever had to make and will ever have to make,” Joe said, sharing that his family’s world had got “flipped upside down”.
He didn’t go into much detail about the symptoms Joules had been experiencing that caused them alarm, but said the tot “wasn’t herself”.
“We noticed a few little changes, we took her to the hospital and got told everything was fine.”
Joe said they’d come home but he and his partner had a feeling something just wasn’t right.
“Parents know best, so we took her back the following day and we were told the devastating news that Joules has a mass on her brain.”
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The family, who live in Essex, were then rushed to King’s College Hospital in London where they were told the tot had a brain tumour classified as the “most aggressive form of cancer”.
“Unfortunately it is inoperable and terminal,” Joe said, fighting back tears.
The family were told Joules might only have about nine months to live.
Joe described coming to terms with the idea of losing his daughter.
The most common symptoms of a brain tumour
More than 12,000 Brits are diagnosed with a primary brain tumour every year — of which around half are cancerous — with 5,300 losing their lives.
The disease is the most deadly cancer in children and adults aged under 40, according to the Brain Tumour Charity.
Brain tumours reduce life expectancies by an average of 27 years, with just 12 per cent of adults surviving five years after diagnosis.
There are two main types, with non-cancerous benign tumours growing more slowly and being less likely to return after treatment.
Cancerous malignant brain tumours can either start in the brain or spread there from elsewhere in the body and are more likely to return.
Brain tumours can cause headaches, seizures, nausea, vomiting and memory problems, according to the NHS.
They can also lead to changes in personality weakness or paralysis on one side of the problem and problems with speech or vision.
The nine most common symptoms are:
- Headaches
- Seizures
- Feeling sick
- Being sick
- Memory problems
- Change in personality
- Weakness or paralysis on one side of the body
- Vision problems
- Speech problems
If you are suffering any of these symptoms, particularly a headache that feels different from the ones you normally get, you should visit your GP.
Source: NHS
“Joules has the worst of the worst, there has never been a child survive, there’s never been a doctor to operate.”
The dad shared that Joules was undergoing radiotherapy to manage her symptoms and that he and his partner had decided to keep the tot “unaware” of her illness.
“She will slowly deteriorate and we’ve got to sit back and watch our beautiful, funny little girl fade away and the thought of that is absolutely killing us.”
Joe described Joules as his “best friend” and “little dance partner”.
He used the opportunity to raise awareness about childhood brain cancer, and continued to do so in the months following.
The posted videos dancing with his little girl, urging viewers to “dance for Joules” as part of their efforts to shed light on her disease
To support the family in their difficult time, their friend and TOWIE star Kirk Norcross also set up a GoFundMe page, which amassed almost £96,000.
‘Still dancing’
Joe once again posted a video on TikTok to share the devastating news of his daughter’s passing – just seven months after her diagnosis.
“As you’ve noticed, we’ve not been on social media for the last couple of weeks.
“The reason for that is we had to spend every single second with our beautiful princess Joules – and we did just that.
“We didn’t leave that little girl’s side.”
A tearful Joe added: “We take so much comfort in the fact that she inspired and touched the life of so many people around the world.”
He called on viewers to “carry on dancing for our beautiful little Joules, because I know she’ll still be dancing.”
She was the bravest, kindest, most beautiful little girl and we miss her so much
Joe Smith
Since her death, Joe’s update video has received over 2.5 million views and the “dancing for Joules” tag also surpassed over 3,000 videos on TikTok, with users dedicating their videos to the tot and her family.
Joe thanked everyone for sharing their “dancing for Joules” videos online and vowed to “carry on” raising awareness around DIPG.
He added that Joules’s funeral will also take place at The Garden of Eden Crematorium in Kent on December 27.
He encouraged anyone joining to “wear pink and blue for Stitch and Angel colours, but you’re welcome in black.”
“Everyone who knows us or knows Joules or has followed us, you’re all welcome,” the dad added.
He also requested that people donate to The Royal Marsden Cancer Charity on Joules’ behalf.
“She was the bravest, kindest, most beautiful little girl and we miss her so much.”
