A Braunton woman with a rare genetic condition is campaigning for the next generation to have access to a new treatment.
Sue Tucker has Type 2 Spinal Muscular Atrophy (SMA) which affects her strength and means she is wheelchair-bound.
There is no cure for the condition, which only affects around 2,000 people in the UK, though a new treatment approve in the US in 2016 has seen vast changes in younger patients.
But the National Institute for Health and Care Excellence (NICE) has drafted guidance which does not recommend nusinersen, also called Spinraza, be available on the NHS.
In August NICE concluded the cost of the drug, which is injected directly into the spine, was too high and it was unsure of its long-term effectiveness.
Sue, 53, has had SMA since birth, and is part of a group called TreatSMA campaigning for the drug to become available.
Sue said: “My SMA is now quite advanced; I have very limited movement, I need a ventilator at night and I have swallowing difficulties. Without treatment this will only get worse.
“For me, at my age, with treatment I could be strong enough not to need the ventilator and eat normal food which would be life-changing.”
Sue said while she would love the opportunity to have access to the treatment, she wants it to become available to all four types of SMA patients.
“I am really fighting for the young people, they deserve it and will benefit much more,” she said.
“There is a chance, with this treatment, if someone has it when they’re young enough, they could regain the ability to walk, or even have a family; all of things I wish I could have done.”
On September 7, members of TreatSMA held a protest in London against NICE’s decision not to fund the treatment.
“It all comes down to cost with this treatment,” Sue said.
“But when you think of how much it costs the NHS to treat someone with SMA for their whole life, it all adds up.”
Sue, who also spent years campaigning for a special Changing Places toilet in Barnstaple, has never let her SMA hinder her.
She said: “I make the most of what I can do, rather than what I can’t do. I’ve never concentrated on what I can’t do.”
You can find the draft guidance from NICE here.