ORCHARD PARK, N.Y. -- A local family may have to move to Colorado to get the lifesaving medicine their daughter needs to survive.
Anna Conte, 8, from Orchard Park has Dravet Syndrome, which causes her to have seizures, sometimes hundreds each day. Other children with the disorder are seeing miraculous results by using a special kind of medical marijuana.
Anna, her mom Wendy and Aunt Marie just returned from Colorado. While there, they filled out the necessary paperwork, met with doctors, and signed up on the waiting list for "Charlotte's Web" the specially-grown marijuana plant that has very low levels of THC, which is what makes someone high. It's very high in CBD, the other main ingredient in marijuana. It is made into an oil that is given to the children.
"It's like a miracle drug," Wendy said, noting that every child on the medication has seen positive results, and some are now seizure free, simply by taking the special medical marijuana.
So you can imagine her frustration with not being able to get that care for her daughter in New York State. Moving to Colorado could mean splitting up her family. Husband John runs a business, which has helped pay the incredibly large medical bills.
Their two other kids have roots in the Orchard Park area. They're still trying to determine if everyone will move, or if just Wendy and Anna will move full-time. Aunt Marie is also considering a move.
"They need support," Marie said. "So the decision will be who stays and who goes. It's unfathomable to us."
TRIP TO COLORADO
The first trip out West was a success. Wendy completed all the paperwork and met with other "marijuana refugees" who have moved to Colorado. Anna saw two neurologists and was approved for the medication. And they got to visit the greenhouse, where the folks with "Realm of Caring" grow the lifesaving medication.
"They are truly life-savers," Wendy said. "Truly very caring people there."
Among them are the Stanley Brothers, who developed the "Charlotte's Web" strain. They work day and night on producing as much of the medication as possible. They are not getting rich off their discovery, but to them, it's not about the money.
"It was clear to us the path that we needed to take and that we needed to stay with this and there was purpose," Jordan Stanley said. "It was a mission at that point."
The Stanley brothers currently grow medical marijuana in a 6,000 square foot greenhouse. They're preparing to build two more, both of which will hold the CBD-rich plants. That will allow them to help hundreds more children.
Wendy said they are prepared to expand the operation into New York State if lawmakers here will allow it.
"We need New York to pass the Compassionate Care Act," Wendy said, referring to the bill pending in the Senate and Assembly.
It will easily pass in the Assembly, but some Republicans in the Senate have blocked the bill.
The Senate sponsor says she has the votes to pass the Act, but the leadership won't bring it up for a vote.
Among Western New York Republicans, only Senator Mark Grisanti (R-60th District) has publicly announced his support for the CCA.
"I encourage my colleagues to vote for this bill," he told 2 On Your Side in an exclusive interview.
In a statement, Senator Patrick Gallivan (R-59th District) said his position is evolving.
"While I still have significant misgivings about traditional medical marijuana... I have examined existing research and believe that providing some form of access to cannabinoid-derivative oil, with negligible amounts of THC, warrants consideration in New York State," Gallivan said.
A spokesperson for the Conservative Party of New York State, which has been accused of threatening Republicans with stripping their endorsements over support for medical marijuana, indicated the same, saying low-THC medical cannibis is something the party could support, depending on the language.
So far, a standalone "Charlotte's Web" bill has not been introduced in Albany.
The governor has proposed a very limited pilot project for medical marijuana, allowing it in 20 hospitals statewide. However, that would not apply to pediatric cases, and some experts have expressed doubt about its effectiveness at all.
2 On Your Side has reached out to the governor's office regarding the Compassionate Care Act, but we have not received a response. It's clear the governor has not put any political capital toward legalizing medical marijuana.
In a poll released Monday, New Yorkers overwhelmingly support medical marijuana.
The Quinnipiac University survey found 88% of those polled favor medical marijuana. Only 9% oppose it.
In a release, Maurice Carroll, director of the Quinnipiac University Polling Institute, called medical marijuana "a no-brainer."
The poll showed 93% of Democrats, 82% of Republicans, and 88% of independents favor legalizing marijuana for medical purposes.
A majority said they do not think marijuana use leads to other drug use.
TIME IS RUNNING OUT
While many medical experts have acknowledged the benefits of medical marijuana, some want further testing.
Wendy supports that but says she doesn't have the time to wait years for results from studies. Anna's condition is considered terminal.
"Any seizure could take her life," Wendy said. "And the doctors say if she doesn't die from the seizures, she'll die from the medications she's on."
Anna's currently on 16 different powerful drugs. One is imported from Europe. She's constantly accompanied by oxygen and rescue medications wherever she goes.
For now, the Conte's -- like other families with children who have seizures -- will lobby New York lawmakers to pass the Compassionate Care Act. If that looks unlikely by October, when Anna's medication will be grown and ready, they will make that difficult decision of who moves to Colorado.
"It's a sacrifice no person should have to make," Wendy said.