A teenage spinal muscular atrophy sufferer living in Australia is holding out hope Pharmac will fund the drug keeping her disease at bay, so she can move home to New Zealand to study.

Natalie Edwards, 16, has been living in Broome, Australia, for the past six years.

She moved with her mother, stepfather and two stepsisters in 2012 for family reasons, but was given another reason to stay when Spinraza, a life-extending drug for SMA sufferers, became funded through Australia's Pharmaceutical Benefits Scheme last year.

SMA is a degenerative disease caused by a loss of motor neurons that affects the


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