Eddie
30 September 2009 – 23 September 2020
“All we could do was watch as this monster slowly take over our once active, happy little boy.
This is not okay. It will never be okay.”
Eddie was a special boy. An old soul in a young body. He was intelligent, witty, and quietly creative, with a generosity of spirit that showed itself early. He loved helping his teachers and guiding younger children through their reading, patient and kind beyond his years.
He loved movement and freedom — playing soccer, riding his dirt bike, snowboarding, wakeboarding. He loved his dog, K9, with the fierce loyalty only a child can give. He loved music from the 70s and 80s, Christmas songs at any time of year, and old films that felt oddly made for him, as if he recognised something familiar in them.
In October 2019, when Eddie was just ten years old, his parents noticed something wasn’t right with his eyes. An optometrist diagnosed sixth nerve palsy. The explanation didn’t sit well. A CT scan showed nothing, but instinct pushed them further. A paediatric ophthalmologist agreed with the diagnosis, but ordered an MRI — just in case.
The MRI showed a mass.
A glioma.
Diffuse Intrinsic Pontine Glioma.
A fatal brain cancer.
Eddie’s mother, Sonja, remembers the moment with devastating clarity.
“It was a mass. A glioma. A fatal brain cancer. Eddie had two months of radiation, followed by two good months at home. Then we tried the chemotherapy trial drug. Of course, it did nothing — except make him miserable.”
The symptoms returned. Then worsened.
“We stopped the treatments and tried to make him comfortable. All we could do was watch as this monster slowly took over our once active, happy little boy.”
Piece by piece, the disease stole what Eddie loved. His strength. His independence. His ability to move freely through the world he had delighted in. There was no cure to reach for. No treatment to hope in. Only time — and far too little of it.
Eddie died on 23 September 2020.
Seven days before his eleventh birthday.
This is what DIPG does.
It takes children who were well, loved, and full of promise — and gives families nothing to fight with but courage. Stories like Eddie’s are not rare. They are repeating, quietly and relentlessly, in homes across the world.
And that is why this matters.
I'll always be Joss' Mum
£10
A gift of just £10 could help give support to a family who are struggling with a new diagnosis
£25
A gift of £25 per month could pay for a days pioneering research into rare brain tumours
DIPG brain tumours are currently an incurable and devastating cancer.
DIPG robs a child of their hearing, sight, movement, the ability to swallow and eventually their breathing.
It’s only with your help that research into this devastating cancer is possible.
Joss Searchlight are funding vital research into the most life-threatening brain tumours. Please be part of our journey.
FAMILY SUPPORT
Along with providing financial grants to help families struggling with the expenses of having a child with cancer we also provide life changing support.
Support Workers who advise, visit and support families with compassion are an essential part of Joss Searchlight.
Family support is in our DNA, as the founding trustees know what an important part compassionate support played in helping them during their son’s illness and after his sad death.
We can’t fund research and we can’t support families without you.
FINDING A CURE
At Joss Searchlight we totally depend on donations. Donations enable us to fund vital brain tumour research, to find a cure for some of the rarest brain tumours, to campaign for better treatments and support families on their cancer journey when they need it most.
Research organisations need funding stability, they need to know that they have enough money coming in every month to allow them to do their incredibly important work. We need to pledge a certain amount of funding every year to make sure they’re able to do everything they can to find cures and treatment programmes for some of the hardest-to-treat brain tumours.
Children should enjoy their childhood
Not spend their lives fighting cancer
Help us find a cure for rare brain tumours. Give your support today
