Help Harry walk again
Donation protected
If you know me, you’ll know it takes a lot for me to ask for help. And even as I write this, the whole idea still feels pretty weird and uncomfortable.
But that’s where we are.
It’s been two years since I lost all feeling below the knees. Two years of constant pain and immobility. And two years with no diagnosis or way forward.
I believe I will walk again.
I always have, since the very start. And all the time I still have power in my upper legs, I have every reason to keep on believing.
But my window of hope is closing by the day.
The longer I stay undiagnosed – and the longer I sit in my wheelchair without targeted treatment – the harder it’ll be to get back on my feet.
I need to make things happen. But I’m out of options with the NHS.
My only hope is private care. And having not been able to work for over a year, I simply can’t afford it on my own.
So that’s why I’m here asking for your help – in any small way possible.
My first target: £30,000
This will help me cover 9 months of neurophysiotherapy – an essential part of my recovery, whatever the diagnosis ends up being.
The dream goal: £50,000
The physio alone would make a massive difference to my daily life and recovery chances.
But with these extra funds, I’d also be able to see a neuroinflammation specialist.
Someone who can view me as a blank canvas, look at my case as a whole, and finally get to the root of all my problems.
It’s a huge amount to ask.
And I can’t tell you how grateful I am that you’ve even read this far.
It’s an even bigger ask if you don’t know me. So here’s a bit more about who I am and why I’m here in front of you today.
The moment everything changed
In July of that year, I was in Ireland on a work trip. While I was there, I started to feel a numbness in my right leg. It soon turned into pins and needles – and it wouldn’t go away.
I got home and the tingling was still there. It then accelerated up my leg, stopping just below my knee. Soon after, exactly the same happened on the left side.
When the pins and needles went away, I had no feeling in either leg from the knee down. Then it started in my arm.
At that point, I was rushed to the specialist neurological hospital in Haywards Heath. And I ended up staying there for 4 weeks.
Desperate for answers – and still searching
I was treated on the assumption of Guillain-Barré Syndrome.
This involved having IVIg infusion – basically to reboot my immune system and stop it from attacking my nervous system.
That word ‘assumption’ is key. Because from day one until now, nobody’s ever been able to agree exactly what’s wrong.
I’ve had eight MRI scans in all. Every radiologist has interpreted things differently. So all my treatment so far has been based on best guesses.
We’ve been down rabbit holes of everything from Lyme disease to myelitis. And now, two years on, we’re no closer to having the real answer.
Life flips on its head
After four weeks in hospital, the feeling still hadn’t returned to my legs. So when I finally got home, life looked very different for everyone.
As for me, I started walking as a 10-month-old. I was on a lead (or ‘reins’, as my mum would probably prefer to call them) soon after, to stop me terrorising swans in the park. And I barely sat still for the next 30-odd years.
Adjusting to my new reality, then, was an enormous challenge – and one that continues to take a heavy toll on my mental health.
Things take a turn for the worse
In the weeks and months after I left hospital, my health problems began to spiral. And I still live with the effects now.
I find myself in constant, excruciating pain, relying on heavy medication just to get through each day.
I have powerful, uncontrollable hand spasms which leave me needing someone to physically unclamp my fingers.
I’ve developed unbearable skin conditions and allergies (chronic spontaneous urticaria being a particular highlight). Combined with the pain and everything else, these make life pretty miserable at times.
I spent another 5 weeks in hospital, in August 2022, with constant and intolerably painful back spasms.
And because my basic day-to-day functions take so much effort, I now feel exhausted nearly all the time.
Socialising used to give me so much energy. But now it saps it all away. So much so that I sometimes have to sleep for two days before and after even the smallest outing or gathering.
Looking for a plan and a purpose
I stopped working in January 2022, and I’ve been unable to return to the workplace since.
Losing that sense of purpose might have been bearable if I’d had a recovery plan to focus on. But because I was (and still am) undiagnosed, my treatment has been next to non-existent.
I’m now stuck in a horrible limbo situation. I’ve reached the limit of what the NHS can offer. And while I know what private care I need to move my recovery forward, I don’t currently have the means to access it.
The longer I stay untreated, the more my body will adapt to its new state. The higher the risk of losing that last bit of strength in my legs. And the smaller my chances of getting better.
The source of hope that keeps me going
Neurophysiotherapy – properly planned and targeted – is the one thing that’d improve my life more than anything else right now.
Doing it regularly, with the right professional, will help keep my legs active and maintain their muscle power. Whatever my diagnosis ends up being, staying active is essential.
An initial nine months of neuro physio should be enough to get me back on my feet, with the aid of a walker. It’d reduce a lot of the strain on Barbara, as it’d make me better able to look after myself.
And while I’ll always need physio support in some form, this regular contact will give me the tools and techniques to be more proactive in my recovery.
There’s also a very slim chance that, if it turns out I have a functional neurological disorder, being on my feet regularly might trigger a response and restore the feeling to my legs.
The dream I refuse to give up on
Ultimately, I want to walk again. Free and unaided.
Seeing a neuroinflammation specialist would bring that dream closer.
They’d be able to look at my case as a whole, run their own scans and observations, rule out all the lingering dead ends and half-diagnoses, and hopefully get to the bottom of things.
It’s expensive stuff, and my target with this fundraiser would only cover the consultation and diagnosis. But that would already be way more than I could possibly have wished for.
It would finally give us a clear idea of what we’re dealing with. A plan for how to deal with it. And some fresh hope and energy for whatever comes next.
The other dream I maybe shouldn’t admit
Is there ever a good time to admit you’re a Spurs fan? After the season we’ve just had, probably not.
But there we go – I love them. My uncle first took me to see them in 1994, when I was 7, and they’ve been a huge part of my life ever since.
Football is an escape, as any fan will tell you. Not always for the better, when you follow the team I do. But it’s helped me through some difficult times – especially in the last couple of years.
Like in February 2022, when I was at my lowest point and couldn’t even get out of bed.
Spurs were playing Man City in a Saturday-evening game – the kind I’d never normally miss. But I felt so awful that I decided not to watch it.
Just before kick-off, though, I hauled myself up and put the game on. And when Harry Kane scored that last-minute winner, the feeling of joy was so pure that I left all my pain behind for a moment.
A couple of years ago I’d have been there in the stadium, jumping around like crazy and feeling that elation with all the fans around me. And while Spurs’ new ground has brilliant disabled facilities, and I’m so grateful I can still occasionally get to games, it’s just not the same experience.
My dream is to take my place in the stands again, among all the other fans, and feel that delirious joy once more. Up on my feet and unhindered by my health.
If you do decide to donate even the smallest amount – even now you know who I support – please know you have my eternal love and gratitude.
Harry
Organizer
Harry Pells
Organizer