Families are celebrating on Wednesday night after an announcement by Pharmac signalling a major step towards funding life-saving treatment for those under 18.
It's called Spinraza and will benefit those living with the rare disorder known as SMA (Spinal Muscular Atrophy).
It would be the first drug to be publicly funded for those living with the condition in New Zealand and up until Wednesday, 2-year-old Zoey Butcher was facing an uncertain future.
"We had this fear consuming us of whether she'll get treatment and what will happen. We were in limbo, watching her deteriorate every day," said Chauntel Wedlake, Zoey's mum.
That's because she has the rare disorder Spinal Muscular Atrophy.
In its most severe form, it will slowly rob someone of life's most basic functions like walking, talking and even breathing.
Newshub last spoke to Zoey's family in May and in just that short space of time, her condition has deteriorated.
"We have this little pavement step outside our room that she'd climb up and down, non-stop on her own. Now, she can't even do that step without holding my hand," Wedlake said.
But that could all be about to change.
On Wednesday, Pharmac issued a consultation on a proposal to fund Spinraza from January 1, 2023.
"Nusinersen [Spinraza] has the potential to make a substantial difference to the lives of young people in New Zealand living with spinal muscular atrophy and for their whānau and support networks too," said Lisa Williams, Pharmac's director of operations. "I want to acknowledge the time that many people have put into advocating for those living with SMA and to those who have shared their own very personal stories with us.
"I am very heartened to share the news that we are proposing to fund a treatment."
Spinraza is currently available in 64 countries, including Australia and it can stop symptoms in their tracks and has been described by patients as nothing short of a miracle.
"We're really excited about this treatment," Williams told Newshub.
And so too is Fiona Tolich, who has spent half a decade fighting for it.
"I just cried… every time a family has called, we have cried more than we have spoken," she told Newshub.
That's because the SMA community knows how monumental this step is.
"We have effectively, with this decision, saved countless lives and a heck of a lot of future heartache," Tolich said.
It's a heartache that these families are hoping to soon leave behind.
"She can have a life, a normal childhood, we'll be able to plan a future without any limitations now," Wedlake said.
Tolich agrees.
"It just feels like we've finally, after climbing a thousand mountains, we've found the right one and the horizon is so beautiful."
