A dad of two has been diagnosed with multiple sclerosis after he came last in a sports day race, sparking concern. James Coull, 44, first noticed something was wrong when he lost control of his legs while walking home in March 2023.
Despite being a keen runner, he finished last in a parents’ race at his nine-year-old daughter’s school, prompting him to visit his doctor. After several distressing months, James was diagnosed with relapsing remitting multiple sclerosis (MS), an incurable chronic disease that can cause muscle weakness, vision problems, numbness and memory issues.
The diagnosis forced James, from the Isle of Skye, Scotland, to quit his job as a marine technician in the oil and gas industry, leaving him unable to financially support his wife, 41, son, 20, and daughter, nine. Now, he is trying to raise £45,500 for haematopoietic stem cell transplantation (HSCT), a high-risk treatment that aims to “reset” the immune system by destroying it and regrowing it using stem cells. According to the MS Society, since 2005, one in every 330 people who have undergone HSCT have died due to the treatment.
James, who has been left “blown away” by the generosity of people, has already raised over £30,000 through his online fundraiser. This is nearly enough for him to make the trip to Mexico in May.
He said: “I’m nervous, but I really want it to happen. 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.”
James remains hopeful despite the risks, saying: “There’s 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. 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 wrong when he took his son’s car to a garage in March 2023 and tried to walk home. He recalled: “My legs were uncontrollable, they just got so weak and I almost couldn’t place one in front of the other. 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.”
A couple of hours later, his legs began to feel normal again and he brushed off the incident. However, after coming last in a parents’ race at his children’s school sports day, despite being a “fairly decent runner”, he decided to see a doctor about his symptoms.
James revealed that in retrospect, he suffered from odd symptoms like bladder and vision issues. He described the uncertainty as “horrible” and took it upon himself to investigate, leading him to suspect 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 admitted. After a series of medical tests, including an MRI, neurological exams, and a spinal tap, his suspicions were confirmed.
“At that point, I thought, this is it, there is no cure – it was horrible to think I would be living with something forever,” James recounted. Since his diagnosis, he’s struggled with mobility and constantly tries to strike a balance between rest and exercise.
The condition has taken a toll on his family life. “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 shared.
The diagnosis forced him to quit his job, altering his family’s financial situation. “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.”
Accessing HSCT treatment through the NHS is challenging, and private treatment costs are prohibitively expensive, as per the MS Society.
HSCT is touted as most effective for MS patients with frequent relapses and early-stage disease, without significant disability, says a charity. However, it’s not without risks like immune system damage, cancer, and fertility issues.
The mortality risk is notably higher in the elderly, but James, who plans to receive treatment in Mexico this May, remains optimistic. The funds raised will cover his treatment, a 28-day stay, and meals for him and his caring mum.
“I’m absolutely blown away by how generous people have been,” he expressed gratitude. “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’ fight against MS, you can donate at gofundme.com/f/help-james-fight-ms-with-hsct-in-mexico.