Andrea Crysler of Marcellus has to watch her little boy Harrison every single second because in the blink of an eye, the three-year-old could fall to the ground and start violently convulsing.
"It's everything that you would think it is. It's terrible. It's horrible. It's terrifying. You wish there's more you could do. You just have to keep him safe and reassure him and let him know he's ok and you're right there," says Crysler.
Diagnosed with myoclonic epilepsy at six-months-old, Harrison suffers up to four violent seizures a day, something medical marijuana has cured for some people.
"The responses that they've gotten from children with similar seizure disorders is extraordinary," says Crysler.
Crysler was disappointed to learn the emergency provision was taken out of New York's new medical marijuana bill, meaning it could be up to 18 months before her son gets the treatment he needs.
"That's discouraging because there are a lot of children that could benefit from this and they need it and they need it yesterday," says Crysler.
One of those children is Kaylie Annable who turns 12 later this month. Her mother, Kathy, wants to be able to give her the treatment she needs as soon as possible.
"We need it now. Not 18 months from now. Some of our children and my little Kaylie, I don't know if she has 18 months," says Annable.
It's already too late for three children in the Buffalo area who died earlier this month before they got access to the drug.
"I don't want to be in those shoes. I don't want to have to bury my little girl," says Annable.
These mothers aren't sure medical marijuana will work for their children
but it does give them hope.
"I would love to get to know him. I would love to hear what he has to say," says Crysler.
's never spoke a word to me. She's never said I love you mom. She's never said mommy
," says Annable.
Hope that they will finally get to know their children.