"Our daughter needs Spinraza to keep living, essentially," her mum Emily told Newshub. They were hoping for a big boost to Pharmac's billion-dollar budget but the Government just went with what they promised in the election - $200 million. "We're utterly, utterly devastated," Emily says. "We just realise there is no hope in New Zealand at all if you have a rare disease." She's not the only one - 100,000 people signed Malcolm Mulholland's petition to double Pharmac's budget. Mulholland had a blunt response for the Finance Minister. "F*** you, Grant Robertson." Robertson acknowledged how hard it must be for those needing life-saving drugs.