(The champion powerlifter, Firefighter colleague and friend Jon Spreadbury & me in New Zealand 2002)
I always pride myself in doing the best that I can, even if it was messing up and this was reflected throughout my life. Having always participated in various sports I represented the brigade and great Britain in powerlifting and travelled around the world winning gold medals and gaining a world record or 2 along the way! The gold medal I won in New Zealand in 2002 is inscribed on the back with a dedication to my beautiful daughter Gracie who sadly passed away. Being strong, being fit and able was always important to me.
So, after going to the doctors in early 2016 with some symptoms, namely twitching muscles in my right arm we were under the impression it was a neck injury trapping nerves which could be resolved with a tricky little operation and I would be good to go. Then, after some MRI scans and EMG tests in may 2019 my world was turned upside down and some! I was told that I may have Motor Neurones disease, I cried there and then with my partner then went straight to my boys, it was the most upsetting thing I've possibly ever done telling them what I may have and the consequences of a confirmed diagnosis. I have cried more since diagnosis than in my entire life. After some last ditch tests and an agonising few weeks I went with my partner at the time (now my beautiful wife), Arlene, to the neurologists on July 10th 2019 and unexpectedly we were told the diagnosis there and then that I have Motor Neurones disease.
Most of us know not much more than the fact that Professor Stephen Hawking famously contracted and fought this disease for 55 years and couldn't move, was in a wheelchair and spoke through a computer. Motor Neurones Disease, or amyotrophic Lateral Sclerosis (ALS) as its known in the USA amongst other places is a FATAL neurodegenerative disease whereby the motor neurones in the brain & the spine which send the signals to your muscles to move start to die off because of a genetic process in the cells. Even though experts are learning more now than ever about what actually happens in the body and discovering more genes that are mutated and affected by this, no one knows why it starts and, no one knows how to stop this, so, it's incurable. It is thought that a combination of life, stress, toxicity in the body and genetics are the main cause. Nearly everyone with this dies within 3 to 5 years of symptom onset. so I've already almost outlived the odds. It's sometimes referred to as the 1000 day disease for the obvious reason, clues in the name. Despite being documented for around 150 years still very little is known about this fatal disease. It is one of the few diseases that give no physical indicators in the body that confirm you have it so, diagnosis is completed by working backwards and eliminating all other possible causes before finally labelling you with MND.
I am on the MIROCALS clinical trial at Kings College hospital in London. This involves 5 injections of a immunotherapy drug called Interleukin2 each month which could hopefully slow or halt progression, I'm praying. The problem is that every positive result in laboratory tests on mice has never replicated when trialled on humans.
Despite being given this diagnosis I am determined now as I always have been to beat this!! I will not surrender to this. Anyone who knows me knows that I will put up a great fight. There are a very small number of people, 42 currently confirmed who have survived this disease, 1 in the UK, for whatever reason, genetics, supplementation, positivity? I want to join the list. www.healingals.org is the site to read more about some of these remarkable survivors if you are interested. Please watch this short, inspirational video of a remarkable young man, a survivor from Portugal.
Many of you may remember the ice bucket challenge a few years ago? I took part myself with a cheeky little cameo stepping out of my Fire gear revealing my plastic nurses outfit that I borrowed from Dan Bowers cab driving outfit's wardrobe, before being dowsed in freezing water at the Fire Station. But naively I didn't even take the time to read what I was actually raising money for. The young man who started the challenge, Pete Frates, sadly lost his battle with MND only a few months ago after raising awareness and over $250 million dollars towards the cause of finding a cure. Here I am now, unbelievably suffering from the very same rare disease! 2.9 in 100,000 contract it.
Sadly a handful of high profile sports persons have recently contracted this disease and are raising awareness, Doddie Weir the ex Scotland rugby union forward, Stephen Darby ex Liverpool footballer, Rob Burrows the ex Leeds rhinos and England rugby league player. Tragically one of the greatest rugby players of all time, Joost Van Der Westhuizen of South Africa contracted and died of this demonic disease in a headline making fight in February 2017. despite being given 2 years max he lasted around 8 years in his fight with MND. RIP champ!
How does anyone deal with this? Well, there is no right or wrong. To say things are hard both physically and mentally is an understatement. I thought luck couldn't get much worse when my young daughter Gracie died many years ago.
I have slow onset/limb onset, whatever slow means, which could give me a few more years to live but, no one can tell me this for sure. Yet despite all this I class myself as one of the lucky ones, I'm lucky because I have my amazing 4 young boys Christopher, Oliver, jake and Lucas who are my life, I'm lucky because I have an amazing, beautiful wife who won't leave my side, I'm lucky because I have an amazing supportive family , I'm lucky because I have some of the most amazing friends anyone could wish for and finally, I'm lucky because I have a chance, I have a chance to make a difference, a difference to my loved ones lives in teaching good values and giving my kids the knowledge to go on and do everything they want to in life, a difference in spreading my new found knowledge in the mystery that is MND and a difference to my life, I want to make memories for my loved ones and memories to take with me! I'm lucky to have the chance to plan for the inevitable, to say my goodbyes.
So, after having a beer or so with Mr Darren Rose and him telling me he was planning to ride the length of the UK from John O'Groats to Lands End, 876 miles, I Immediately said I'd do it too. After another beer It began to sink in what I'd said. Originally this was a personal challenge for me but now, and after the suggestion from Darren, this is a fundraising event whereby we can hopefully raise awareness and funds for MND. I want to smash our target, I want to put this out there to anyone & everyone. We are hoping to get a group of friends, family or supporters to clap us in at Lands End. How amazing would that be, and emotional to say the least. Let's do this, as a team. Lets smash this!
We were going to get up to John O'Groats in my good friend Terry Leigh's black cab, but, his great, eye watering, crippling, fixed price deal came in just a bit too high for our bottomless pit of money as he clearly thinks we have!
I need to make some small adaptations to my chosen bike for the ride due to the disease progression in my arms, although they are still bigger than my very good friend Joel Clarks. Other than that it's now about training and preparing.
We were planning to start the ride on the 25th May over 2 weeks but, due to the COVID19 pandemic we will hold fire until the restrictions ease and then get a revised start date for as soon as possible.
Please be kind enough share this campaign with all your contacts whether it's WhatsApp, Twitter, Instagram, Gaydar or Facebook and if anyone has any close contacts in local, or national press, radio or TV, would they possibly be able to get us a few seconds of their valuable time. I really need to make this count. I am determined to raise awareness as best I can.
THANK YOU FOR TAKING THE TIME TO READ, SHARE OR EVEN DONATE TO MY CAUSE. WATCH THIS SPACE FOR UPDATES ON OUR FUNDRAISING AND PREPARATION . IF YOU WISH TO BE A PART OF THIS AND JOIN THE TEAM WHICH IS NOW 3 OF US, PLEASE DON'T HESTITATE TO CONTACT ME.
DonationsSee top donations
- Tracey Matthews
- Cameron Clark
- Jamie McDonnell
- Sharon Dodd
Fundraising team: Fundraising team (4)
#1 fundraising platform
More people start fundraisers on GoFundMe than on any other platform. Learn more
In the rare case something isn’t right, we will work with you to determine if misuse occurred. Learn more
Contact us with your questions and we’ll answer, day or night. Learn more