Public help dad raise thousands for intense chemo treatment in Mexico after ‘life-changing’ multiple sclerosis news
Members of the public have helped a dad of two with multiple sclerosis raise thousands for treatment in Mexico, after defeat at a sports day parents’ race set alarm bells ringing.
James Coull, 44, who is based on the Isle of Skye, Scotland, first realised “something was not right” when he lost control of his legs while walking home in March 2023.
After several “horrible” months James 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.
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.
“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.”
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.
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 that, 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.
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.
“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.
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.”
To donate to James’ fundraiser, visit gofundme.com/f/help-james-fight-ms-with-hsct-in-mexico.