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WATCH: Girl asks province for cash to help fight rare disease
12 year-old needs expensive drug to fight rare form of Cystic Fibrosis
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Imagine your little girl is diagnosed with a rare form of cystic fibrosis and the only drug that helps her live a normal life isn't covered by OHIP.

That's what one 12-year-old from Bradford is dealing with, relying on a  $348,000 a year drug to live.

The only way Madi Vanstone can afford it is with her parents' private healthcare and community fundraising.

Before the drug, Vanstone had no energy, had headaches and stomach aches. But now she's running and playing with her friends.

Her mom Beth says the family pays $5,000 out of pocket each month. They have four months worth of cash to keep Madi going, with another planned fundraiser later this month.

The family met with the premier and health minister for 20 minutes this morning, as reveal the province is going to make negotiations with the drug company more transparent.

The premier says that way OHIP could cover it.

All provinces are involved in a back-and-forth to make the drug available under public healthcare in Canada.

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Imagine your little girl is diagnosed with a rare form of cystic fibrosis and the only drug that helps her live a normal life isn't covered by OHIP.

That's what one 12-year-old from Bradford is dealing with, relying on a  $348,000 a year drug to live.

The only way Madi Vanstone can afford it is with her parents' private healthcare and community fundraising.

Before the drug, Vanstone had no energy, had headaches and stomach aches. But now she's running and playing with her friends.

Her mom Beth says the family pays $5,000 out of pocket each month. They have four months worth of cash to keep Madi going, with another planned fundraiser later this month.

The family met with the premier and health minister for 20 minutes this morning, as reveal the province is going to make negotiations with the drug company more transparent.

The premier says that way OHIP could cover it.

All provinces are involved in a back-and-forth to make the drug available under public healthcare in Canada.

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