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BERLIN - OCTOBER 26: A doctor injects a H1N1 swine flu vaccination in the arm of a male nurse of the Charite at Virchow clinical center, on October 26, 2009 in Berlin, Germany. German officials have begun a mass immunization by offering the vaccine to policemen, firefighters, medical personnel and other people who work in the health or rescue services across Germany. The rest of the population will be receiving the vaccine in approximately 7 days. (Photo by Andreas Rentz/Getty Images)

As a parent, you will do whatever it takes to save your child’s life….this mother is doing all she can.

A family in Minnesota says their insurance company has said no to a treatment that could cure her condition — spinal muscular atrophy, or SMA.

SMA is a genetic condition. It causes muscle weakness and can lead to death. If not treated, the condition causes respiratory issues where kids are unable to breathe on their own.

The medication is a gene therapy treatment called Zolgensma that must be administered by the time the child is 2 years old and it costs…. $2 million for one dose!!!!  It is considered the world’s most expensive drug.  I mean seriously?  $2 million?  Why is this soooo expensive.  No one can afford that?  Who decides these prices?

Maddy Bruce turns 2 in 3 weeks.  Of course mom is going crazy trying to get this drug for her daughter.

Her mothers insurance is provided through the state of MN… and has denied the treatment.

Officials with the state have refused to pay for the treatment. But it has approved another treatment — Spinraza. That injection is done three times a year and she’ll have the treatment her whole life. The cost is also steep, at more than $100,000 a dose…. geez.  so much better.

What a horrible place to be in, my heart goes out to this mother. So sad…looks like so many other parents have had to deal with the same situation.

What do you do?

Check out the story from local TV station KARE