A DAD diagnosed with motor neurone disease has had his hopes of taking part in a life extending drug trial dashed.
Mark Sommerville was given his devastating diagnosis in October last year and told he had 18 months to live.
In July, the dad of four signed up for a drug trial of Proleukin, where he would have to pay £530 a month as the treatment is not available on the NHS.
But he has now been forced to withdraw as it is unsuitable for patients with Crohn’s disease, which he also suffers from, leaving him facing a “death sentence”.
Mark has now appealed to the Scottish Government to increase funding into research and care for those affected.
The 43-year-old, from Uddingston, Lanarkshire, said: “When the consultant sat me down, he said, ‘You have MND. You’ll be dead in 18 months’.
“I got a second opinion and the doctor told me, ‘You have MND. Go and enjoy the life you have left. There are no dreams here’. It was that brutal.
“Sadly, I’ve since been told I’m not suitable for the trial as I have Crohn’s disease so it’s back to a death sentence.
“I was going to pay £530 a month for the rest of my life because there isn’t a cure and the drug isn’t available on the NHS.
“The Scottish Government needs to put more money into research and finding a cure.
“People who have MND can’t wait, they need help now.”
Mark was diagnosed after having pulses in his left arm and has since set up The Mark Sommerville Foundation. The charity has raised more than £11,000 to help patients and their families.
Last month, Mark married his partner of 22 years Erika, 42.
The dad to Rebecca, 24, Ellie, 21, and the couple’s children Olivia, 12, and Cole, eight, tied the knot in a ceremony in front of 80 friends and family.
Mark, who was forced to give up his job as a general manager at ABM Industries last year, said: “We set up the foundation so we can try and help people and their families affected by the condition.
“We’ve recently set up 50 boxes for those just diagnosed with things that can help, things I had to go and buy or research myself, like shoe, zip aids and special cups.
“Our wedding was a lovely day. My diagnosis wasn’t the only reason we got married but knowing you have limited time, you want to do all these things you maybe never got around to doing before.
“But I want to fight back. I’ve never lost a fight this year and I’m determined not to lose this.”
According to MND Scotland, in the UK, there is a one in 300 lifetime risk of getting MND and there is currently no cure or effective disease modifying treatment available.
There are currently 400 people in Scotland living with the condition.
The fatal disease stops signals from the brain reaching muscles and causes muscle weakness and wasting, so sufferers can quickly lose their ability to walk, talk, eat and breathe unaided.
Mark paid privately for Proleukin – an immunotherapy drug – after results from a trial in 2022 reported progression of the disease slowed by up to 40 per cent in some cases.
Dr Jane Haley MBE, Director of Research for MND Scotland, said: “Since 2018, we committed £3.5million to setting up the MND-SMART clinical trial which, whilst anchored at the University of Edinburgh, provides an opportunity for people with MND throughout the UK to participate in a clinical trial.”
The Scottish Government has committed £482,000 on MNDresearch.
Public Health Minister Jenni Minto said: “We are co-funding, with MND Scotland, a three-year clinical academic fellowship to help progress the search for an effective treatment.”
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