Posted by Michael Wonder on 15 Apr 2019
Kiwi father's emotional plea to Jacinda Ardern to fund life saving drug for rare disease
15 April 2019 - The parents of two young girls diagnosed with a rare disease have urged Prime Minister Jacinda Ardern to fund lifesaving medication, so they can move back to New Zealand.
Belinda and Gavin Old's two daughters Olive and Ivy both have spinal muscular atrophy (SMA). It's a disease that eats away at muscle nerves, and it affects 100 Kiwis.
The medication for SMA is Spinraza - but the drug is not funded in New Zealand. It costs $1 million, per person, per year.
