A dad-of-two with multiple sclerosis needs thousands of pounds for treatment in Mexico, after defeat at a sports day parents’ race set alarm bells ringing. James Coull who is based on the Isle of Skye first realised “something was not right” when he lost control of his legs while walking home in March 2023.
He then came last in a sports day race for parents at his nine-year-old daughter’s school, despite being a keen runner, so decided to see his doctor. After several “horrible” months the 44-year-old was diagnosed with relapsing remitting multiple sclerosis (MS) – an incurable chronic disease of the central nervous system that can cause muscle weakness, vision issues, numbness and memory problems.
James has had to come to terms with quitting his job as a marine technician in the oil and gas industry, and not being able to financially provide for his wife, 41, son, 20, and daughter, nine, who have been adjusting to the diagnosis.
Now he is aiming to raise 57,500 US dollars (£45,500) to cover the costs of haematopoietic stem cell transplantation (HSCT), an intense chemotherapy treatment that aims to “reset” the immune system by wiping it out and regrowing it using stem cells.
According to the MS Society, the treatment comes with a high risk of side effects, and since 2005 one in about every 330 people who have had HSCT have died because of it. “Blown away” by people’s generosity, James’ online fundraiser has already received more than £30,000, almost enough for him to make the journey to Mexico in May.
“I’m nervous but I really want it to happen,” James told PA Real Life. “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’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 noticed something was seriously wrong when he took his son’s car to a garage in March 2023 and attempted to walk home. “My legs were uncontrollable, they just got so weak and I almost couldn’t place one in front of the other,” James said.
“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.”
Shortly after, James came last in a parents’ race at his children’s school sports day, despite being a “fairly decent runner”, so he decided to go to the doctor and get his symptoms checked out.
James added with hindsight, he can see he experienced other strange symptoms, including bladder and vision problems. It was “horrible” to not understand the cause of his symptoms so he did his own research and learned he may 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 is available on the NHS but is difficult to access, while private costs can be extremely high, according to the MS Society. HSCT is most effective for people with MS who have frequent relapses, and MRI scans showing new or active lesions on their brain or spinal cord, are early in the course of the disease, and do not have significant disability, according to the charity.
Side effects of HSCT can include long-term damage to the immune system, and an increased risk of cancer and fertility problems, but the risk of death is highest in elderly patients and James is hopeful of success. He hopes to undergo a treatment in Mexico in May and the amount raised will cover the cost of the treatment, accommodation for 28 days, and three meals a day for himself and his mother – who will be his carer.
“I’m absolutely blown away by how generous people have been,” he said.
“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.” You can donate to James’ fundraiser here.