Help Jo Fight an Incredibly Rare Spinal Tumour

This is Jo. My best friend.

Jo has been my best friend for all of my adult life, but the truth is, I'm far from alone in feeling that Jo is one of the most special people in my life.

Jo touches the hearts of everyone she meets. She's everybody's friend.

She is the hub of her family home, a devoted wife to the most loving husband, a caring daughter and a loving mum to two fantastic grown-up children. Family means everything to Jo, and she has so much to look forward to, including the incredibly special moment of watching her daughter get married next June. But Jo's ability to make people feel like family extends far beyond her own.

Jo is the person who takes you in like one of her own. She'll feed you, look out for you, laugh with you and love you. Her door is always open and somehow there's always room for one more.

She's the organiser and the doer — the person who gets everyone together and makes things happen.

Jo loves her music, especially live music, and you can guarantee she'll be one of the first people on the dance floor. She's funny, caring, incredibly hardworking and always up for a challenge.

Most of all, Jo is determined and incredibly resilient — qualities she has needed more than ever over the past few months.

In January, everything changed

Until January this year, Jo was a fit, healthy and fiercely independent 46-year-old who lived life at full speed. Whether she was running, training, cold-water swimming, working in the family business or organising everyone around her, keeping Jo still was almost impossible.

Then she noticed numbness in one of her legs.

Something that seemed relatively small became the beginning of a journey none of us could ever have imagined.

Further investigations discovered a tumour growing within Jo's spinal cord. Within a matter of weeks, Jo's life changed beyond recognition.

From a suspected benign tumour to a devastating diagnosis

Initially, doctors believed the tumour may be benign. But over the course of just a few weeks, Jo began experiencing increasingly severe symptoms. Her condition deteriorated to the point where doctors needed to operate and remove the tumour.

The damage to Jo's spinal cord was devastating. Following the operation, Jo was left without the use of her legs and confined to a wheelchair. Further investigations then revealed a large mass covering much of her lower spine, while a biopsy of the tumour that had been removed confirmed the devastating diagnosis of an exceptionally rare Malignant melanocytoma.

The speed at which the disease had spread was extremely concerning. The fear now is that it could continue travelling further up Jo's spine towards her brain. Tragically, the mass in her lower spine has already caused such significant damage that Jo has been told she is unlikely to walk again.

Jo and her family are now having to adapt the downstairs of their home around life in a wheelchair — work that is still ongoing — simply to allow Jo to regain some independence and carry out the everyday things most of us take for granted.

But paralysis has not been the only battle Jo has faced.

Jo's tumour has behaved aggressively and has caused serious neurological complications, including hydrocephalus and increased pressure within her skull, cranial nerve problems, seizures and severe spinal pain. At times, these symptoms leave someone who previously couldn't keep still confined to her bed.

Yet through everything this disease has thrown at her, the qualities that have always defined Jo haven't disappeared.

And she is fighting incredibly hard.

There is hope — and this is why we need your help

Jo is currently undergoing radiotherapy and, encouragingly, this appears to be slowing the rate at which her tumour is growing.

However, because the tumour is within her spinal cord, there are limits to the amount of radiotherapy that can safely be given. Treating such a sensitive area carries a significant risk of serious side effects.

Jo and her specialist medical team therefore need to find another way of fighting this incredibly rare tumour.

And there is now an opportunity that could help them do exactly that.

Finding a treatment specifically for Jo

Jo has the opportunity to undergo specialist Tempus molecular testing.

The testing will examine the molecular characteristics of Jo's tumour in detail, looking for alterations that could potentially be targeted with treatment.

This is particularly important because melanocytoma is so exceptionally rare. There simply isn't the same established treatment pathway or volume of research that exists for more common tumours.

If the testing identifies an actionable molecular target, her specialist doctors may be able to identify a personalised or targeted treatment capable of controlling — and potentially shrinking — her tumour.

There are no guarantees, and we don't want to pretend there are.

But there is an opportunity.

And when it's your wife, your mum, your friend — my best friend — you grab every opportunity you possibly can.

This is why I'm asking for your help

We are hoping to raise £55,000 to give Jo the opportunity to take these next crucial steps in her treatment.

The specialist testing and potential treatment Jo is seeking are not currently available to her through her NHS treatment pathway.

The first £5,000 we raise will fund Jo's Tempus molecular testing.

If that testing identifies a suitable targeted or personalised treatment, the first course of treatment could cost approximately £50,000.

There are no guarantees about what the testing will find or what treatment may follow, and we want to be completely open about that.

But if the results identify something that could help Jo, we don't want money to be the reason she can't have it.

Without an effective way of controlling the tumour, it is expected to continue growing and risks causing further devastating neurological damage.

So we're fighting against time.

Every donation, however large or small, will help give Jo another option.

£5 helps. £10 helps. £50 helps. Every single donation gets us closer to our £55,000 target.

And if you're not in a position to donate, you can still do something incredibly valuable:

Please share Jo's story.

Share it with your friends, family and colleagues. Share it on Facebook, Instagram and WhatsApp.

With something this rare, we never know who might read Jo's story, who they might know or where that connection might lead.

Thank you for taking the time to read Jo's story. Whether you are able to donate, share this page, or simply send your love and support, it genuinely means more to Jo, her family and all of us who love her than we can say.

Thank you.

Kelly

Joanne Mcleod

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