Meet the inspirational mum who has raised thousands after losing her 10-year-old son to an incurable brain tumour
Dianne Parkes set up Joss Searchlight, a dedicated organisation focused on supporting families affected by childhood brain tumours. The organisation was named after Dianne’s own son, Joss Parkes, who tragically died from an incurable diffuse brain stem glioma (DIPG) at the age of only 10-years-old.
Despite being given only weeks to live following his diagnosis at the age of four, Joss defied all the odds and lived for a further six years, passing away in 2011.
“Joss was so much fun. It didn’t matter what he went through, he just continued to smile,” Founding Trustee of Joss Searchlight, Dianne Parkes, said.
“He was four years old when he was diagnosed and given two weeks to live. He’d gone from being a totally healthy little boy to having a fatal diagnosis.
“Joss Searchlight comes from a very personal place, and other trustees and support managers are in the same boat. Joss brought happiness to us all, and he wanted to help other children. He is our absolute inspiration for all of this.
“Despite these diagnoses, nobody is ever beyond helping. There’s always something you can do to help people.”
Partnering with The Brain Tumour Charity, Dianne and the team at Joss Searchlight have raised over £150,000 to help progress research into rare incurable brain cancers.
As well as raising vital funds for research into rare childhood brain tumours, Joss Searchlight provide comprehensive support to the children affected and their families. From financial help to emotional counselling and specialist equipment, Joss Searchlight is committed to making a difference in the lives of children and their families across Wales and other areas of the UK.
“There are 70 children in Wales every year that get diagnosed with brain cancer, and every year a quarter of those will die,” Dianne added.
“With brain cancer, you’ve immediately got a disabled child. They lose their vision, they lose their hearing, their coordination. You need to put systems in place to be able to help.
“We want to help families as much as we can, but we also want to get across that they need to be working with the likes of hospices as well. A lot of parents bring their child in a day or two before they die, whereas they could have had a whole year or more of support before that.
“It’s really crucial that we start connecting families to resources which is what we do in other counties, and what we need to do in Wales as well.”
Today, Joss Searchlight is one of 169 projects in Wales to receive a share of over £7 million in funding thanks to National Lottery players. The grants will help groups carry out their vital and varied work in supporting their communities.
The National Lottery Community Fund, the largest funder of community activity in the UK, awards grants to strengthen society and improve lives across the UK. Thanks to National Lottery players, it will distribute at least £4 billion by 2030, supporting activities that create resilient communities that are more inclusive and environmentally sustainable.
£9,700 of The National Lottery Community Fund grant awarded to the organisation will be used to fund a support worker to address emotional needs, and hampers that will contain essential household and medical items.
John Rose, Wales Director of The National Lottery Community Fund, said: "Dianne and her team at Joss Searchlight are exceptional people dedicated to supporting families and children affected by rare cancers here in Wales. Thanks to National Lottery players, we are able to support incredible projects like this who go above and beyond to support people going through the most difficult times in their lives."
Joss Searchlight is the recipient of a recent National Lottery Awards for All grant. To find out more about this funding from The National Lottery Community Fund, please visit our website: https://www.tnlcommunityfund.org.uk