Stewart, who now lives in Dubai, will travel to southern Morocco next month to take on the 33rd annual Marathon Des Sables. The event is described as ‘one of the toughest footraces in the world’ by the Discovery Channel and will see Stewart run the equivalent distance of Edinburgh to Inverness over 6 days.
He will scale towering sand dunes, traverse baking hot salt flats and withstand highs of up to 50 degrees Celsius - all in the name of MND Scotland. Past participants have been known to experience hallucinations due to the extreme nature of the challenge.
Stewart will be taking on the challenge in memory of his Grandfather, Charlie Pirie, who died from MND in 2002. Stewart also lost his beloved Aunty Joy from the rare disease in 2012.
MND is a rapidly progressing terminal illness, which stops signals from the brain reaching the muscles. This may cause someone to lose the ability to walk, talk, eat, drink or breathe unaided. There is currently no cure or effective treatment for MND and the average life expectancy from diagnosis is just 20 months.
Stewart said: “We lost my Papa Pirie to MND in 2002, and my Aunty Joy in 2012. My motivation to raise funds for MND Scotland comes not only because of their loss, but in respect of what they meant to us in our lives and how they persevered.
“We went through all the stages of disbelief, denial, anger and finally a peaceful acceptance of what was to come for both my Papa and Aunty. I was never personally a carer for them, so I could never truly appreciate the daily struggle or the dark days that my Gran Pirie, my parents and immediate family had to go through.
“My most striking memory is of their desire to enjoy the time they had left and to keep a positive outlook. Their first thoughts were to their family and letting us know that it was ok.”
After living with MND for only a matter of months, Stewart’s Papa began using a communications aid on which he relied to speak in the final stages of his life.
“The last night my sister and I spent with Papa Pirie, he'd been given a LiteWriter and spent the whole evening telling us jokes and stories about the nurses which we weren't allowed to tell Gran. He kept up the cheeky spirit that we had always loved him for, even through those final days.”
It was later, in 2010, that Stewart’s aunty, Joy Mort, discovered that she too was facing this rare and devastating disease.
“She always loved playing card and board games whenever we went on family holidays. We once went away for a week to Kintyre in 2011 and, despite being at an advanced stage with MND, every night she would be the centre of anything we played and she always kept her mischievous spark.
“The last time we spent together, I was about to head off for a new job in the Middle East. She wanted to hear all about it and was so excited about my new adventure, giving me a big thumbs-up as I headed off.”
Competitors in the Marathon Des Sables are required to be self-sufficient, and will be made to carry everything they require to survive for 6 days. Stewart will be supported by a medical team and will receive water rations. He will also be made to carry his entire food supply, bedding, an emergency flare, medical kit and venom pump, in the event that they encounter any dangerous wildlife.
Despite all of this, the biggest challenge of the Marathon Des Sables is the mental battle. Stewart will look towards the courage shown by his Papa Pirie and Aunty Joy, and the memories they shared, to get through some of the most difficult parts of the challenge.
“Even when they held deep down fears, their bravery and humility in the face of overwhelming odds is something I just cannot fathom. I never want to draw any comparison to this ultra-marathon, but it will be their memory and their perseverance which will keep me going.”
Despite all of the risks and the expense of taking on the Marathon Des Sables, Stewart is confident in the knowledge that he’s helping to make a difference for people still affected by MND in Scotland.
“MND is a frightening disease. It affects a part of our bodies that, despite modern advances, we know very little about. That’s why I’m taking on this challenge for MND Scotland; it’s so important that we make sure that the charity can keep funding research and providing a support network to people like Joy, and my grandad, who have been affected by MND.
“Unfortunately running the Marathon De Sables requires a less-than-modest budget. I’ve asked myself lots of times during my training events, why not just give up and hand all this money to charity, seems the sensible course?
“But I have to remind myself that I have the ability to raise some awareness of MND through my fundraising and, with some hope, encourage others to take on their own challenges to help fight back against this horrible disease.
“That's why I can’t wait to pus myself in the name of this great cause!”
Iain McWhirter, MND Scotland’s Head of Fundraising and Volunteering, said: “I want to thank Stewart for taking on this incredible challenge on behalf of MND Scotland.
“It’s because of inspirational people like him that we’re able to provide care and support to people affected by MND in Scotland, as well as funding cutting-edge research into finding a cure.
“I wish Stewart all the best for the Marathon Des Sables and we’ll be cheering him on every step of the way.”
You can support Stewart’s fundraising by sponsoring him at www.justgiving.com/fundraising/stewart-bell5 with all funds going directly to MND Scotland.