Joules Smith was just six when she was diagnosed with an aggressive form of cancer. Inspired by her battle, her grieving parents have launched a fundraising campaign to help other families caring for terminally ill children
The death of a child is every parents’ worst nightmare but it’s one Joe Smith and his wife Elisha live through every day.
Yet despite still coming to terms with the loss less than a year ago of their beloved ‘dancing queen’ daughter Joules, the couple have channelled their grief into an extraordinary determination to help others.
Inspired by the six-year-old’s strength and kindness, they established A Touch of Joules, a not-for-profit company to help and support other families whose children have life-limiting or terminal illnesses.
To date, tens of thousands of pounds have been raised in their daughter’s memory.
Now, Joe hopes their Pride of Britain nomination will amplify Joules’ story – and help even more children.
“Our aim is to give back to others. She touched the lives of so many people and we want to continue that – we’re determined to help other families who are in the same situation as we were,” says Joe who lives with Elisha in Kent.
“We’re thrilled with the nomination but quite shocked as well.
“People say we’ve been brave but we’re not. If we’ve been strong it’s because we got our strength from Joules. We still do.”
Joules, who Joe describes as an ‘extraordinary’ little girl who adored dancing and nature, was diagnosed with an aggressive brain tumour last May.
The family had been on a break to Center Parcs when her parents noticed their daughter’s balance was ‘a bit off’.
Concerned, they consulted doctors but initial tests revealed nothing wrong. However, a later CT scan pinpointed a mass on her brain.
The little girl was then referred to King’s College Hospital in London for an MRI. It was here where medics broke the devastating news she had a highly aggressive form of brain tumour known as a DIPG. It was both inoperable and incurable.
“Within a split second our whole world turned upside down; our world collapsed. It’s the worst news any parent can have,” Joe remembers.
Referred to the Royal Marsden Hospital in Surrey she began radiotherapy treatment to help with symptoms. She also began making TikTok dance videos with her dad.
“The therapy meant we had four months of her being back to herself so we wanted to raise awareness of childhood cancer,” he says.
“Joules was dancing almost as soon as she could walk so we went on TikTok; it was a bit of silliness really but the videos just took off; soon we were gaining millions of views.”
Before long the Dancing for Joules trend had spread worldwide with fans creating their own routines. Even dance sensations and Britain’s Got Talent winners Diversity took part.
“At one point we were trending just under Donald Trump!” laughs Joe.
Next the family hit on the idea of writing a book about Joules and her love of dance with the aim of spreading positivity.
Working with an author Sally Scott, and with input from Joules herself, The Girl Who Loves to Dance focuses on the joy dancing brings the main character. Featuring a host of animal friends named by Joules, it also has her handwriting on a front cover designed in her favourite colour of pink.
Joules finally lost her battle with cancer in December 2024. Her book was read at her funeral.
To date, the Touch of Joules CIC has raised more than £50,000 to help other
families, caregivers and for The Royal Marsden to whom all book proceeds go.
“Joules did not know she was poorly; she knew she had headaches and went to hospital but we tried never to cry in front of her; we didn’t want her to be scared,” reflects Joe.
“People say; ‘oh, you two are amazing’ but we had no choice. We couldn’t give up.”
“We had an amazing seven months with her. We knew we had to make memories and thanks to our brilliant support network that’s what we did.
“But we know there are people who just don’t have that same support.
“That’s why we have to give back in her memory. It might be something as simple as buying a wheelchair. Or organising a break away somewhere. Or supporting siblings or helping mums and dads get to and from appointments with the kids.
“It may seem like simple stuff but it’s hugely important.”
As is keeping the memory of Joules alive.
“She was the kindest, most caring little soul. I’m so proud of what she is achieving even though she isn’t here.”
To donate, please visit www.atouchofjoules.org
The Daily Mirror Pride of Britain Awards with P&O Cruises honour the nation’s unsung heroes, with the star-studded celebration screened every year on ITV.
The deadline for public nominations is midnight on Sunday, so if you know someone who deserves a Pride of Britain Award, now is the time to tell us about them.
Nominate now at prideofbritain.com
