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On the heels of Governor Cuomo’s reported decision to become the 21st state to legalize medical marijuana use for those with serious illnesses, one Kingston couple remains cautiously optimistic. As their baby suffers from a rare genetic disease, Time Warner Cable News reporter Alexandra Weishaupt tells us the family feels she would benefit greatly from medical marijuana.
KINGSTON, N.Y. -- It’s a plea from parents holding onto hope.
“There’s no medicine that’s offered to me right now, legally, in New York State that has such a high rate of stopping seizures the way that the oil does in Colorado,” said Carly Tangney-Decker.
Optimistic with Governor Cuomo’s reported decision to become the 21st state to allow medical marijuana use for those with serious illnesses. They’re now hoping he gets it right the first time.
“There's so many questions to ask, can my kid bring the medicine to school, can they have it on the school bus, do I have to drop it off, how much can I as a parent have on me when I'm driving or if I'm walking in town or in my house.” said Tangney-Decker.
While they simultaneously hope their 8-month-old baby, Mabel, will be included.
“It's very exciting but it's also like right at the tip. Which way are we gonna go? Are we gonna be included or not, because if we're not I still have to go to Colorado to save my little girl's life,” she said.
Mabel suffers from a rare genetic mutation known as CDKL5, causing her seizures almost daily, heavy sedation from medicines with harmful side effects and a potentially rough road ahead including developmental delays and blindness.
Tangney-Decker is now suggesting Governor Cuomo look into the ways of one particular group in the western state that offers a certain strain of marijuana. The group, known as “The Realm of Caring,” is the life-line that this couple has decided to turn to.
They take the whole plant and they make it a liquid, and they make an oil out of it,” said Tangney-Decker. “It’s high in something called CBD and that is what’s effectively stopping seizures in children.”
It’s a chance for Mabel to take baby steps towards normalcy in the hopes they’ll one day have the same opportunities afforded to them within the state.
“The kids that are on the oil are able to get off all their other pharmaceuticals,” she added. “These kids in Colorado they look at you, they start to smile, they start to really interact with you, and I feel really excited about the opportunity to get to know her and get her to come alive.”
Mother Carly and baby Mabel are set to head to Colorado in two weeks to begin treatment.
Learn more about and support research for CDKL5 and epilepsy: