After a humbling defeat during a parents’ race at his child’s sports day raised suspicion, a 44-year-old father-of-two with multiple sclerosis has seen an outpouring of support, with the public raising thousands for his treatment in Mexico. James Coull realised “something was not right” when he lost control of his legs on his walk home back in March 2023.
Despite being fit and into running, the alarm bells truly sounded when he came last in the school race. Following several “horrible” months, he received a diagnosis of relapsing remitting multiple sclerosis (MS) – a relentless condition affecting the central nervous system that can lead to muscle weakness, vision issues, numbness, and memory problems.
With a heavy heart, James had to leave his job as a marine technician within the oil and gas sector, confronting the challenge of no longer being able to provide for his wife, 41, son, 20, and nine-year-old daughter. They’ve all been grappling with the new reality presented by his diagnosis.
James is now determined to gather 57,500 US dollars (roughly £45,500) to afford haematopoietic stem cell transplantation (HSCT), a potent chemotherapy treatment designed to ‘reset’ one’s immune system by destroying it and then regenerating it from stem cells.
The MS Society has warned that the treatment carries a high risk of side effects, and since 2005, approximately one in every 330 people who have undergone HSCT have died as a result. James, who is based on the Isle of Skye, Scotland, has been overwhelmed by the generosity shown towards his online fundraiser, which has already raised over £30,000 – nearly enough for him to travel to Mexico for treatment in May.
“I’m nervous but I really want it to happen,” he admitted. “It’s a little bit frightening because if something goes wrong, you’re not in your own country, you’ve not got the NHS to help you out. There are no guarantees, but the aim of the treatment is to stop the progression of the disease, but I’m personally a bit more hopeful than that, I’m hoping it can take away or reduce my symptoms.”
He added: “I just want to encourage people living with MS to stay positive that one day there will be a cure.”
James first realised something was seriously amiss when he took his son’s car to a garage in March 2023 and tried to walk home.
“My legs were uncontrollable, they just got so weak and I almost couldn’t place one in front of the other,” he recalled. “It was quite frightening, when you’re a young, fit and healthy man and suddenly you can’t do something that you used to be able to do. Then an hour or two later, my legs began to feel a bit more normal again and I just brushed it off – I had no idea what it was, obviously, and I was just like, oh well, I’m fine now.”
James came last in a parents’ race at his children’s school sports day despite being a “fairly decent runner”. This prompted him to seek medical advice for his symptoms.
Looking back, he realised he had been experiencing other unusual symptoms, including bladder and vision problems. He described the experience as “horrible”, not knowing what was causing his symptoms, so he decided to do some research and suspected he might have MS.
“It actually felt like almost a bit of relief, because I knew what might be wrong with me even though it would be a horrible thing to have,” he said.
After undergoing an MRI scan, neurological tests and a spinal tap, he received a formal diagnosis. “At that point, I thought, this is it, there is no cure – it was horrible to think I would be living with something forever,” he said.
Since then, James has experienced issues with his movement and is “pretty much always fighting a losing battle” as he needs to finely balance resting and exercising. The diagnosis has had a significant impact on his family.
“My youngest daughter can see that dad can’t do this with me any more, he can’t take me swimming as much, or we can’t go on the same walks,” he said. “It’s a life-changing diagnosis because I couldn’t carry on with my work, so I stopped being able to provide for my family financially, so it’s a lot of changes for everyone to get used to.”
HSCT, though available on the NHS, is notoriously difficult to access and comes with a hefty price tag if sought privately, as per the MS Society. The treatment is said to be most beneficial for MS patients who experience frequent relapses, have MRI evidence of new or active brain or spinal cord lesions, are in the early stages of the disease, and have minimal disability.
However, HSCT carries risks such as long-term immune system damage, increased cancer risk, and fertility issues, with the mortality risk being higher among older patients. James, who remains optimistic about his chances, plans to receive treatment in Mexico this May.
The funds raised will cover his treatment costs, a 28-day stay, and three daily meals for both him and his mother, who will act as his carer. “I’m absolutely blown away by how generous people have been,” he expressed.
“I’m even getting donations from people that I don’t know. Maybe they have some connection to MS, maybe someone they knew. It’s so kind of people to donate the way they have.”
To support James’ battle against MS, contributions can be made at gofundme.com/f/help-james-fight-ms-with-hsct-in-mexico.