My name is Shaun. I’m 41, husband to Hannah and dad to Isla (8) and Frankie (6).

For eight years I’ve been fighting an extremely rare spinal cancer, one of only around 20 cases like mine reported worldwide. In January I was told it’s terminal.

In the last few weeks, everything has changed very quickly. A collapsed vertebra has left me without sensation, balance or function in my legs, and I am now reliant on a wheelchair.

We have tried to carry on with normal life for as long as possible, but sadly, things have changed significantly.

I never imagined I would be writing something like this, or asking people for help, but I have reached a point where I know that my family and I need some support.

I want to spend time with Hannah. I want to watch Isla and Frankie grow up, see them play, laugh, learn, make mistakes and become the people they’re meant to be.

I’m hoping to raise money to adapt our home so I can stay independent and remain part of family life, to help with the equipment and costs that come with living with a terminal illness and changing mobility, and to make sure money is never the reason a potential treatment option gets ruled out.

How we got here

I’d had lower back pain since I was 22 and was told it was because I was tall! In 2018 only months before my daughter was born, an MRI found a rare spinal tumour called a myxopapillary ependymoma. A 12-hour operation removed most of it, but not all. I was told what was left was benign and slow-growing, and to get on with life. The surgery left me with permanent nerve damage, but I adapted and carried on.

In 2021, a second tumour appeared higher up my spine, and the original one started growing back aggressively. Over the next year I had two more major operations. One lasted 15 hours, cost me 17 litres of blood and put me in intensive care for three days.

After that came radiotherapy and months of the worst pain I’ve ever experienced. By 2023 I was pain-free and dared to think we’d reached some stability.

We hadn’t.

The cancer came back in my spine in 2024, then spread to my pelvis in 2025. After surgery for that, scans showed many small tumours throughout my lungs and ribs.

I started chemotherapy in January 2026, but every scan since has shown further progression.

Through all of it I’ve kept working and tried to keep life as normal as possible for my family. I’ve tried to protect Hannah and the kids from the fear I’ve been carrying.

Where I am now

Over the last few weeks, things have changed fast. My T5 vertebra has collapsed and is pressing on my spinal cord. I have no sensation, balance or function in my legs. Surgery is too risky, with possibility I would not survive and if I did it would provide only little relief.

Something as simple as walking is now impossible. Things I once did without thinking now take planning, effort and help.

I’m 41. I should be worrying about work, family holidays and watching my kids grow up, not about what adaptations my home needs or how much time I have left.

What the money is for

I’ve never been comfortable asking for help, especially financial help. But this is now bigger than pride.

Grants and charity funding can take a long time, and time is not on my side.

The money raised will help towards:

* Home adaptations to make our home safe, accessible and manageable for me — approximately £10,000–£15,000

* Mobility equipment, such as a suitable powerchair, wheelchair and potentially vehicle adaptations — approximately £5,000–£15,000

* Therapeutic and supportive treatments to help me stay as active and comfortable as possible

* Molecular and genetic testing of my tumour, costing around £10,000–£15,000. Because my cancer is so rare, this could identify targeted treatments or clinical trials that might otherwise be missed

* Treatment or clinical trial costs, if an option becomes available that isn’t covered by the NHS, here or abroad

I know there may be no miracle treatment waiting for me. But I need to know I’ve explored every possibility.

I don’t want my family to look back and wonder whether there was something we could have tried but couldn’t afford.

What this is really about

We don’t know exactly what the future will look like, and that uncertainty is incredibly difficult.

But what we do know is that we want to make our home work for the life we have now, while making the most of the time we have together as a family.

This isn’t about creating a different lifestyle. It’s about preserving the one I already have. I want to stay at home with Hannah and my children for as long as I can.

I want to be there for birthdays, Christmases, school events and all the ordinary moments I once took for granted. I want my children to have happy memories of time with their dad — memories that aren’t defined by hospitals, treatment and illness.

I want to make memories with my family.

I want to go away when we can, have experiences together, laugh together and make the most of the time we have.

I also want to sit with my mates, watch them play golf or cricket, and laugh about all the stupid things we’ve done over the years with a cold beer in my hand.

Those ordinary things mean more to me now than they ever did before.

Nobody can tell me how long I have. But I’m not ready to give up, and I’m not ready to stop fighting.

How you can help

Every donation, however large or small, will help us face what’s ahead.

It could help make our home safer and more accessible. It could help provide the mobility equipment I now need. It could help me explore a treatment or clinical trial that might otherwise be out of reach.

And it could help our family make some really special memories together.

Sharing this page could make just as much difference. You never know who might know a specialist, a clinical trial, someone who has been through something similar, or someone who can help with an adaptation.

And for anyone who fancies doing something completely ridiculous, I’d love to see some challenges — a walk, run, cycle, marathon or whatever you can come up with.

Knowing my mates, there’ll be some questionable ideas. I’ll be there cheering you on, even if it’s from the sidelines.

There’s absolutely no expectation on anyone. Everyone has their own lives and families.

But if you do donate, share this page or take something on, it will mean more to me and my family than I can explain.

Thank you to everyone who has already supported us through treatment, messages, visits and simply being there.

Thank you for standing beside us through the hardest period of our lives.

I’m still here.

I’m still fighting.

I’m still looking for answers.

More time with Hannah.

More time with my kids.

More memories.

More laughter.

More time.

We keep going, We keep fighting!

Shaun / Robbo / Robbie / Daddy