Eight Year Old's Parents: "Our Daughter Needs Medical Marijuana"

February 20, 2014 Updated Feb 20, 2014 at 12:33 AM EDT

By WKBW News

February 20, 2014 Updated Feb 20, 2014 at 12:33 AM EDT

Orchard Park, NY

It's a frightening and all too familiar scene in the Conte house, eight year old Anna Conte having an epileptic seizure in her Orchard Park home.

"Typical seizures usually last less than a minute these can be up to 2 hours," said her mother Wendy Conte.

Anna takes five medications, 16 times a day through a tube in her stomach. Alongside her family, four nurses care for her in shifts 24 hours a day.

"She has a terminal illness called Dravet Syndrome," Wendy explained.

Dravet Syndrome is a so rare that when Anna was diagnosed at 10 months she was one of only 50 in the country suffering from the severe form of epilepsy.

So far Anna has tried 13 different medications, none of them worked.

Now her parents order her medicine from Europe, but even that comes at a price. Those pills have dangerous side effects from anorexia, bone marrow loss, sedation, blood clotting, liver and kidney failure and even death.

The Conte family is hoping for one last chance with Anna in the form of a special kind of medical marijuana called Charlotte's Web named after a girl in Colorado also diagnosed with Dravet Syndrome.

Charlotte had nearly 300 seizures a day, but after taking the oil-based medical marijuana she went seven days without having a seizure.

The odds are so good, the family put Anna on a waiting list in Colorado and is prepared to split apart for the sake of Anna with mom and daughter moving to Colorado leaving the father and their other two children behind in Orchard Park.

They pray a bill legalizing medical marijuana will be passed in New York State before that happens.

Right now the Compassionate Care Act, that would make medical marijuana legal in New York State, is making its way through the Assembly and there's another bill in the Senate.

There are 20 other states that already have similar laws on the books.

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