'I've seen her crying' – Boy talks of toll mother's campaign for spinal muscular atrophy medicine is taking on her

A 10-year-old boy whose mum suffers from spinal muscular atrophy (SMA) will join others to deliver a petition to Parliament this afternoon calling for Pharmac's budget to be doubled.

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Ten-year-old Ryker Tolich wants to see medicine Spinraza funded for his mum. Source: Breakfast

Ryker Tolich will also take part in the nationwide Lie Down For Life beforehand to demonstrate how people continue to die without access to some medicines. 

He told Breakfast he had watched mum Fiona beg for the lives of their friends in the SMA community. 

"I've watched you on TV, I've watched you speaking on these steps and hoping someone in power will listen," he said, reading from a statement he will say in full at the lie down.  

"I've watched you take a case to the Human Rights Commission. She has done this while sacrificing her own health and wellbeing," an emotional Ryker said.

"There have been times when I've seen her crying when she thought she was alone. I know what her cries might mean. It means she feels defeated, frustrated or sickened by what is happening, or in some cases it means another child has died."

Both Ryker and his mum want to see medicine Spinraza funded, which they said Pharmac's own subcommittee had ranked as a high priority to be funded. 

It currently costs $135,000 every four months if one has no access to Pharmac's rebates, they said. It costs nothing in Australia.

"What is wrong with the system. Health should be health, regardless of whether or not you develop it, are born with a genetic mutation, or whether or not you're harmed in an accident," Fiona Tolich said. 

"We need to look at the big picture and go is it OK we allow Pharmac to pick who lives and who dies."

Ryker and his mum were joined by Patient Voice Aotearoa chairman Malcolm Mulholland. 

He said Pharmac's current funding model was "wrecked" and said the government agency needed to be better funded to get medicines off the waiting list and to speed up the process. 

"It comes back to there's definitely been a lack of political will in order to fund Pharmac to the level that it needs to be funded. It's pretty straighforward."

He said the Government needed to give Pharmac more money to give Kiwis the drugs they "desperately" needed.