Every week in New Zealand two people will be diagnosed with motor neurone disease and two people die from it. About 400 people are tonight battling it. There's no known cure yet.
But a treatment - dubbed a game-changer - will soon be available for those with the rare genetic mutation. Only one patient here currently has access to it.
National Correspondent Amanda Gillies has this exclusive story.
Jimmy King sits back in the chunky well-padded La-Z-Boy, a smile on his face.
He's recovering from his monthly lumber puncture, an uncomfortable procedure he travels 250 kilometres to have. But he never complains.
In fact, he welcomes Tofersen being carefully injected around his spinal cord as part of a drug trial - it slows down the rate of his motor neurone disease and gives him a better quality of life.
"Just got rid of the fatigue, because that was one of the worst things too," Jimmy told Newshub.
"Just getting out of a chair was hard work. Now I am back working full-time, pretty much, after not working at all, I definitely can't complain about that one."
A married father of three, Jimmy first developed symptoms when he was just 30. He thought it was a rugby injury.
The eventual diagnosis was a devastating blow from the whole family.
"Your world comes crumbling down really," his wife Brooke said. "I remember the drive home, we just pulled over and cried on the side of the road together."
Motor neurone disease (MND) can be both cruel and debilitating; it gradually shuts down the body, causing paralysis.
Diagnosis to death - usually caused by a weakening of the breathing muscles - is normally two years. Currently, there's no cure.
"We had just had a young kid, and the thought of not being there, not being able to do stuff..."
Jimmy has to stop, tears prick his eyes. He takes a moment then continues: "That was the worst part."
Sadly, in his family, he's not alone. Since his diagnosis he's learned about 40 family members have been diagnosed with - and or died from - the disease. They have a rare genetic link.
"Knowing that family members have lived two to five years and that we had just started our life. It was really hard," said Brooke.
But this family weren't going to take MND lying down. They researched all treatment options and discovered a clinical trial with Tofersen - dubbed the wonder drug - in Canada. So the family moved there in 2019.
"It's been an absolute game-changer," said Brooke. "I 100 percent believe Jim wouldn't be here today if he didn't have that drug."
Then they made arrangements to have the drug provided to Jimmy in New Zealand and were able to return home. He's been the only Kiwi patient able to access it here. Until now.
The maker of the drug, Biogen, has just announced an 'early access' programme for Kiwis diagnosed with MND caused by a SOD-1 gene mutation. It's big news.
The Kings believe if a patient can get on it early enough, they won't have symptoms.
"Knowing we have family members with the gene and symptoms, it's a real great hope for them," said Brooke.
Jimmy King hopes to one day donate his brain to help find a cure. In the meantime, he's happy to freely walk out of his latest appointment. A simple act that wasn't possible before he started getting his wonder drug.
