Auckland 3yo with Spinal Muscular Atrophy faces brighter future thanks to Spinraza treatment funding

A 3-year-old girl now faces a much brighter future thanks to the funding of a rare disorder treatment.

Aucklander Zoey Butcher's just received her first dose of Spinraza.

It's a treatment that halts the progression of the motor neuron disease Spinal Muscular Atrophy (SMA).

In its most severe form, it will slowly rob someone of life's most basic functions like walking, talking and even breathing.

"It will change our life and my daughter's life, and everyone's life with SMA, 100 percent," said Chauntel Wedlake, Zoey's mother.

Zoey calls it "the magic box" - and for good reason. In May, when Newshub last visited her, she struggled to stand on her own. 

But today, she's walking laps in the family's driveway after just one dose. 

"We noticed a lot more of a spring in her step, both me and my partner have. She's definitely a lot more stable, she hasn't had many falls over the last couple of days," Wedlake told Newshub.

It hasn't been a smooth journey, with Zoey still recovering from the procedure.

"That's a boo-boo, it hurt," the 3-year-old said.

She's set to receive more doses soon but her family knows it will be worth it.

"It's an amazing feeling and we feel like Zoey has a future," Wedlake said. 

And it could get even better, following a recent announcement from medicines funding agency Pharmac. 

"Last week, Pharmac issued a consultation on a proposal to fund Risdiplam - this is another medicine used for SMA," said Sarah Fitt, the agency's chief executive.

Risdiplam is an oral liquid and can be taken from someone's home, rather than the hospital.

It's less invasive than Spinraza, which is administered by an injection into the spine.

"The advice from both committees was there was a good reason to fund this medicine, there's a high health need for these patients and they were keen for us to progress," Fitt told Newshub.

"We would certainly hope that we'd be able to progress this to a decision by our board, to enable funding from May 1 of this year." 

While Kiwis wait for that decision, those with SMA under the age of 18 will have free, ongoing access to Spinraza.

"[Zoey] turned around and said to me, 'It's going to make me so big, and so fast, like a cheetah!'" Wedlake said

Zoey agrees: "Like a cheetah!"