Eleanor Dalley didn’t think she’d live to see 50 after being diagnosed with motor neurone disease (MND) in 2019.
There is no cure, and most people die within a few years as they lose their ability to move, eat, talk and breathe.
But for Eleanor, there was a lifeline – a breakthrough drug that has stopped the condition in its tracks.
“It’s a miracle to be honest, it’s like I’ve frozen in time,” the mum-of-one told Sky News.
MND affects the brain and nerves, causing muscles to get progressively weaker. While Eleanor has lost some movement in her legs, her symptoms have not got any worse – allowing her to reach milestones she did not think she would live to see.
“My worst fear was that I’d be dead within a year,” Eleanor said.
“I would put things on TV that would make me cry, so that I could say it was the TV that was making me cry, but it wasn’t really. It was me worrying about, I’m not going to see my daughter grow up or I’m not going to get to 50.
“Having this new drug has meant I’ve achieved all those things.
“But I’m really lucky – and not everybody is getting that same opportunity.”
Eleanor, pictured on holiday, said Tofersen had halted her symptoms
The drug, Tofersen, is the first effective treatment for MND symptoms. Eleanor was able to get it through an early access programme ran by its manufacturer Biogen, which is currently offering it to the NHS for free.
However, it requires regular spinal injections, and while the drug itself is free, some NHS trusts say they don’t have the staff or resources to administer it.
These issues have resulted in a postcode lottery for access, with people like 19-year-old Lillia Jakeman losing out.
‘Mental torture’
“It’s like a carrot that’s dangled, and then it’s taken away,” said Lillia’s stepmum…
