Joss Searchlight, 15 station Lane, Witney (2026)

09/07/2026

💙 Every family's story matters.

This reel is a representation based on a real family we have supported through Joss Searchlight.

To protect the family's privacy, the people shown are not the real family, and their names and images have been changed. However, the events portrayed reflect the reality faced by many families affected by childhood brain tumours.

Sadly, this is not an unusual story.

Every week, families are forced to navigate devastating diagnoses, long hospital stays, financial hardship and unimaginable uncertainty. No parent should have to worry about where they'll sleep or how they'll pay the bills while their child is fighting for their life.

Joss Searchlight is here to help. We fund vital research into children's rare brain tumours, provide practical support to families when they need it most, and work tirelessly to ensure no family faces this journey alone.

💙 Learn more:
https://www.josssearchlight.org.uk/

💙 Support our work:
https://donate.justgiving.com/charity/josssearchlight

🛒 Shop through our Amazon link at no extra cost to you:
https://www.amazon.co.uk/?&linkCode=sl2&tag=jossparksear-21&linkId=f536a9d161f2362dadbc42653c690983&language=en_GB&ref_=as_li_ss_tl

Joss Searchlight is a registered charity in England (Reg. No. 1141704). As well as funding research into children's rare brain tumours, we educate and support families affected by a child's brain tumour.

15/06/2026

🚀 Just One Small Step for Brain Cancer

In 1969, Neil Armstrong became the first person to walk on the Moon, inspiring millions with the words:

"That's one small step for man, one giant leap for mankind."

What many people don't know is that years before making history, Armstrong suffered a devastating loss.

His beloved daughter Karen, affectionately known as "Muffie", was diagnosed with DIPG, an aggressive and incurable brain tumour. She died in January 1962 at just two years old.

Armstrong is often quoted as asking:

"How can they send me to the moon, but can't cure my daughter?"

More than six decades later, that question still echoes.

DIPG is the same devastating disease that took our beautiful Joss.

Think about everything humanity has achieved since Karen died. We have walked on the Moon, built space stations, connected the world through technology and made extraordinary advances in medicine.

Yet children diagnosed with DIPG today still face a prognosis that has changed far too little.

That is why Joss Searchlight continues to fund research, campaign for change and support families facing the unimaginable.

Every child deserves more than hope alone.

Every family deserves answers.

Every day we delay, more children are lost.

💙 Learn more about Joss Searchlight:
https://www.josssearchlight.org.uk/

💙 Donate through JustGiving:
https://donate.justgiving.com/charity/josssearchlight

You can make a donation in whatever way feels comfortable for you through JustGiving, helping us continue funding vital research and supporting families.

🛒 Shop Amazon and support Joss Searchlight at no extra cost to you:
https://www.amazon.co.uk/?&linkCode=sl2&tag=jossparksear-21&linkId=f536a9d161f2362dadbc42653c690983&language=en_GB&ref_=as_li_ss_tl

When you shop using this link, Amazon pays Joss Searchlight a commission from qualifying purchases. It costs you absolutely nothing extra, but every purchase helps us continue funding research and supporting families.

Joss Searchlight is a registered charity in England (Reg. No. 1141704). As well as funding research into children's rare brain tumours, we educate and support families affected by a child's brain tumour.

09/04/2026

Andy’s family needs your prays and good wishes. Andy was diagnosed with a brain tumour at the site of the brain stem in January 2023. His January 2026 scan showed a combination of news, one brain lesion has grown, another remains stabled.

Andy’s mum said “ We are now facing another treatment decision as parents. Each option has pros and cons, and it feels like an impossible choice to make. Please pray for us as we process this again—for wisdom, clarity, and peace. It is incredibly hard on our hearts and minds to walk through these decisions once more”

“Andy has been so quiet since hearing the results of his scan. He struggles to communicate, which makes it even harder for him to share everything he’s feeling. I can see it in him—the heaviness, the sadness, the questions he can’t fully get out. My job as a mom is to make things better—but this is something I can’t fix, and it is breaking me”.

Donate: https://donate.justgiving.com/charity/josssearchlight

13/03/2026

Remembering Jizae who died from DIPG, an incurable brain cancer.
They say the brightest stars leave the longest trails of light.
Jizae’s Mum says “Jizae was our light. And even though she no longer walks beside us, her footsteps remain, guiding us, holding us, loving us. Jizae loved Hiking.This Sunday, we walk where her laughter once echoed. We walk gently, intentionally, and together, placing our feet in her footsteps, carrying her spirit with every step”

Donate: https://www.josssearchlight.org.uk/donate-facebook/

22/02/2026

Childhood brain tumours are rare, but awareness can save lives. While most symptoms are linked to less serious conditions, being informed is crucial.

Dear parents, keep an eye out for these possible signs:
🔸 Persistent headaches
🔸 Unexplained nausea or vomiting
🔸 Changes in vision
🔸 Issues with coordination or balance
🔸 Changes in behaviour or school performance

If you notice any of these signs in your child, consult a healthcare professional. Early detection can make all the difference. Most symptoms aren’t due to a brain tumour, but it’s always better to check.

At Joss Searchlight, we’re here to support and guide you💛
READ MORE: https://www.josssearchlight.org.uk/types-of-tumour/
DONATE: https://www.josssearchlight.org.uk/donate-facebook/

30/01/2026

We’re proud to share that Joss Searchlight is now a funding partner of CONNECT TarGeT, a pioneering clinical trial that brings real hope to families facing childhood brain cancer.
We began this charity after losing our son Joss. What we lived through, what we witnessed, no family should have to face. And yet every day, parents are still hearing the same devastating words. 'There’s nothing we can do.' No options. No hope.

But science is catching up. Thanks to people like Professor Darren Hargrave and the incredible team behind CONNECT TarGeT, the future is beginning to look different.

This ambitious international clinical trial is designed to match children with rare brain tumours to targeted treatments based on the biology of their individual tumour. Potentially it means fewer toxic side effects and better outcomes. And most importantly, it hopefully means children can be treated not just to survive, but to live.

Our funding isn’t just about research. It’s about love. It’s about legacy. It’s about lighting the way forward for the families who are just now starting this journey, scared and exhausted, hoping for a miracle.

We believe in kinder treatments. We believe in giving families something we didn’t have: real options, real breakthroughs and real hope.
This is what your donations help us do.

You are part of this change. Thank you for walking with us.

Read more: https://www.josssearchlight.org.uk/joss-searchlight-is...
Donate: https://www.josssearchlight.org.uk/donate-facebook/

25/01/2026

I'm writing this today as Joss' dad. Not as a charity trustee. Just his dad.
Fifteen years ago, I took a day off work to take Joss to the Hospital in Oxford for what was meant to be a routine — a minor operation to relieve pressure in his skull caused by his DIPG brain tumour.
On the drive there, we sang. Loudly. We sang The Candy Man together, grinning, pretending — just for a while — that life was normal. And for that drive, it did feel normal.
Of course we were frightened. But this was a day procedure, and we were told it had gone well. When Joss came back to the ward, he was himself again — cheeky, full of life. As if nothing had happened.
We talked. We laughed. He looked at me with that familiar glint in his eye and said, "What are you doing here, ugly?"
He ate his favourite chocolate. Drank his Tropicana orange juice. And then, without warning — he had a seizure and stopped breathing.
What followed is impossible to describe. Alarms. Doctors. Nurses. Tubes. Hands everywhere. Our poor boy looking helpless. A moment that fractures your life into before and after. A living nightmare you never wake up from.
They intubated him immediately. They did everything they could. But Joss never regained consciousness.
At 12:03am on the — 25th January 2011 — our son Joss died.

Making the decision to turn off his life support was the hardest thing my wife and I have ever done. It still haunts us. While the angels gained a beautiful young boy, our world was ripped apart as we watched the life leave our child.
And then we had to tell Jamie. He was seven.
I say we, but it was Dianne who found the courage that day. She told him his brother wasn't coming back. I stood outside the door, sobbing.
I cried that day in a way I didn't know was possible, and have ever since. I cry for Joss. I cry for Dianne. I cry for Jamie. Especially at this time of year, the pain consumes our tiny family.
The pain is relentless and debilitating. It changes how you see everything.
Jamie, bless him, struggles more than you can imagine. He didn't just lose his brother — he lost his idol. We can never replace the future he should have had with Joss.
No family should ever have to feel this lost, this hurt.
We have to find a cure for this brutal brain tumour — or at the very least, kinder, less toxic treatments. Dianne and I will spend our lives doing everything we can to stop other parents from standing where we stood, making the decision we were forced to make.
Joss Searchlight exists because Joss existed. It is his legacy.

08/12/2025

Joss Searchlight’s Guiding Light

When we lost Joss to brain cancer, grief consumed me. For a long time, I struggled to do anything at all. It was only when other parents of children with brain tumours began reaching out — frightened, overwhelmed, desperate for guidance — that I realised how urgently support and research were needed. I was stunned to learn that my son had died of a cancer that received just 0.5% of research funding. A cancer most people had never even heard of.

As a bereaved parent, I had assumed we were simply unlucky, that a cure would surely be found soon. But I slowly understood that, at the rate things were moving, it never could be.

I couldn’t bear the thought that Joss’ life — his joy, his imagination, his kindness — might simply fade into an empty space where laughter and love used to be. So we started Joss Searchlight to create the legacy he deserved. Fourteen years on, we have been able to stand beside many families in crisis and help fund essential clinical research into the high-grade gliomas that took our son. Each of the 336 children with brain cancer known to Joss Searchlight strengthens our resolve to be a guiding light for families who find themselves walking the same dark path.

Three years ago, I met Professor Hargreaves at Great Ormond Street Hospital. He spoke about his mission to find gentler, less toxic treatments for children with high-grade brain tumours. He and his team understood something vital: childhood brain cancer is not the same as adult brain cancer — and treating it as though it were is why progress has been so slow. Hearing that gave me something I thought I’d lost: the sense that science was finally turning its full attention toward these children.

Perhaps a cure won’t arrive in my lifetime. But we all know that breakthroughs in other devastating illnesses are only possible because someone believed in early research decades earlier. Without that foundation, today’s hope simply wouldn’t exist. And hope, fragile though it may be, is what every bereaved parent longs for — a small, steady light in the dark.

What moves me most is knowing that people I have never met — people like you — have shown such extraordinary compassion. Your support has helped build Joss’ legacy and brought comfort, strength and real possibility to so many families facing the unthinkable.

From the bottom of my heart, thank you. Your kindness is helping to change what the future looks like for children living with this devastating diagnosis.

Wishing you a peaceful Christmas

Dianne,
Joss’ mum

08/12/2025

Ava - 5 year old Ava passed away in 2020 after fighting a fatal brain cancer

Up until near diagnosis Ava was like any other perfectly happy and healthy 4 year old- ready to start her very first day of school the following year.

In October 2019 Ava vomited, the doctor suggested it was a bug of some sort.

A few days later at day-care, Ava fell asleep just before lunch was served. By the next Saturday, Ava was feeling nauseous and wobbly on her feet. On Sunday Ava had a scan that revealed a tumour the size of an apple on Ava’s brainstem. Ava was diagnosed with Diffuse Intrinsic Pontine Glioma (DIPG) - a rare, inoperable form of cancer on her brain stem. This tragic news came out of nowhere after a few days of feeling a little unwell.

It is a condition, the medical experts told them, that has no treatment and a zero survival rate.

“I don’t understand how this worst case even exists” said Ava’s mother, Vanessa. How do we live in a place where there is no treatment, no hope and no chance when a child has a particular brain cancer. Ava had no chance. She was going to die.”

Ava underwent radiation for 30 days under general anaesthetic each day in order to reduce the tumour’s effects as much as possible.

“It’s such a horrible disease. With the radiation treatment, after about two weeks Ava could no longer walk. Then she lost the ability to speak properly. It’s as if the child becomes trapped in their own, little body – they can’t swallow, can’t talk, can’t eat, can’t move. “Our situation was so surreal and terrifying. And we realised it can happen to anybody – anybody can be told their child is going to die, and there’s nothing that can be done to save them.

The family organised a camper after Ava’s diagnosis and embarked on a road trip with Ava and her younger sister Amelie to try and create some special memories as a family.

🎄 This Christmas, help us bring hope.

👉 Donate today so we can keep fighting for children like Ava and supporting their families every step of the way.

https://www.josssearchlight.org.uk/donate-facebook/
Registered UK Charity No. 1141704

08/12/2025

Lucy - age 6 “She was just 6 years old.She could not move any part of her body except for her eyes—a little"

Lucy was an energetic and happy child who bravely battled a highly aggressive and fast-growing form of brain cancer known as DIPG.

She was silly and so creative. She enjoyed creating art, dressing up, playing with her siblings. She loved dancing and pretending to be a rock star. Her light always shined bright as she shared her overflowing love and joy with those around her.

Lucy’s mum said "She slept a lot, but she was also cognitively aware and could hear and understand us. She could not eat. She could barely drink. Because of those two things, we expected her to pass away any day.
Instead, she went at least two weeks— And trust me, that was not what we wanted for her” Lucy’s family cherishes every moment they had with her and they feel her loss profoundly every day.

Like Joss Searchlight and all the bereaved families that stand with us they remain dedicated to making a difference and raise funds so that cancer researchers can search for more gentle, less toxic cancer treatments. Joss Searchlight are proud to help fund the clinical trials at Great Ormond Street Children’s Hospital!

💛 This Christmas, please help us fund kinder treatments for children with brain cancer.
Your donation can help bring comfort, care, and hope to families walking the same painful path.

🎁 Donate today: https://www.josssearchlight.org.uk/donate-facebook/
🕯️ In memory of Lucy — and for all the children we’ve lost far too soon.

Joss Searchlight

09/07/2026

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