ORCHARD PARK, N.Y. -- For the Conte family, life is truly day to day.
"Today was not a good day for her, no," Wendy Conte said.
Her daughter, eight-year-old Anna, has been suffering from violent epileptic seizures since she was two months old.
"The smaller seizures, she can have hundreds of those a day," Conte said.
She has been vehemently pushing for the legalization of medical marijuana in New York State. Unfortunately she said a proposal announced by the governor Wednesday doesn't consider children like Anna.
"The specific strain she needs is (called) Charlotte's web," she said. "It needs to be harvested here and grown here and made into an oil."
An executive order by the governor would allow 20 New York hospitals to prescribe marijuana to some patients.
"Under the right circumstances, this could be one of the limited number of exercises in which marijuana was being objectively evaluated in a prospective fashion," Roswell Park Cancer Institute CEO Dr. Donald Trump said.
Roswell Park told the state's health commissioner it could be interested in participating in marijuana research.
"That would be substantial contribution to the care of cancer patients around the country and would and inform public policy to a certain extent," Trump said
Dr. Steve Lakomy at Mt. Saint Mary's Hospital in Lewiston, meanwhile, called it a good first step.
"Now that Governor Cuomo is involved, he can use his pulpit to push the Senate to pass a less restrictive bill," he said.
Conte and other parents plan to go to Albany Monday to push the Legislature to pass the Compassionate Care Act.
"It is tightly regulated, well-written. It is going to be one of the toughest bills in the nations for marijuana," Conte said.
She said Cuomo's proposal isn't good enough. For families like hers, the clock is ticking.
"Every day, every hour, we have no idea if the next seizure will kill Anna," she said.