N.Y. residents want access to treatment available in other states.
At nearly 3 years of age, Morgan Jones can't crawl, speak, chew or even lift her head, and her tiny body is frequently racked by seizures.
Amanda Houser, 9, takes numerous medications daily and sticks to a brutally restrictive diet that has helped control but not eliminate her seizures — for now.
Both girls have Dravet syndrome, a rare form of epilepsy marked by severe, hard-to-control seizures. The condition is incurable, and people who have it frequently experience developmental delays, language and speech problems and other effects.
The parents of both girls — like the families of such children nationwide — want to try a new treatment, an oil derived from a specially cultivated marijuana strain grown by six brothers in Colorado. But because medical marijuana remains illegal in New York, both families are tantalized by a treatment that seems so promising yet so out of reach.
"Why is a very effective form of treatment being denied to our daughter?" asked Deane Houser, a Suffern, N.Y., resident who is considering moving all or some of his family to Colorado to get his daughter treatment. "Why should we have to move to get this medicine?"
The marijuana that has been helpful to children like Amanda and Morgan is not smoked — it is an oil that is ingested — and it is low in the chemical that makes users high.
A wave of communities nationally voted in November to legalize small amounts of marijuana, which is already approved for medical use in 20 states and the District of Columbia.
But New York, bluest of the blue states, is not among them.
"New York is a progressive state on a lot of issues, but drug policy is not one of them," said Sen. Diane Savino, D-Staten Island. "We have some of the most draconian laws in the country."
Assemblyman Richard N. Gottfried, D-Manhattan, held a hearing Wednesday on Long Island as he and Savino prepare to reintroduce medical-marijuana legislation. Parents of sick children and adults with conditions like Parkinson's disease and cancer urged lawmakers to approve the Compassionate Care Act.
Not everyone favors legalizing marijuana for medical use. Janet Buchbinder, leader of the anti-drug group Larchmont-Mamaroneck RADAR, Responsible Action: A Drug and Alcohol Resource, fears that legalizing marijuana in any form will make it easier for young people to get their hands on it.
"Alcohol and prescription drugs are regulated too, but minors manage to get them," she said.
Parents who want to try the treatment for their children are infuriated by both the lack of legal progress and what they perceive to be knee-jerk reactions against allowing the drug for medical reasons.
"How can you say 'no' to a child who is only 2 1/2 and has already suffered so much?" asked Morgan's mother, North Salem resident Kate Hintz. "There is so much evidence that this could help."
The little girl has tried 10 medications — most not approved by the Food and Drug Administration for such a young child — in a mostly futile attempt to control her seizures.
Amanda Houser's parents are worried that as she gets older she will be less willing to follow the demanding diet that controls some of her seizures. She has started to wonder why her typical meal — bacon, a bowl of mayonnaise, two tiny pretzels and a cup of cream — is different from what her parents and teenage brother and sister eat.
Even the diet plus medication is imperfect: She still has hundreds of myoclonic seizures — sudden, fast contractions of muscles — every day that disrupt her activities and grand mal seizures several times a month.
"We want more options," Deane Houser said. "Just the thought that there is something else out there that we can try gives us hope."
Until this summer, parents of children with Dravet syndrome were loosely organized. Then CNN's Dr. Sanjay Gupta featured a young Colorado girl with Dravet syndrome in his documentary, "Weed."
No medicine could control Charlotte Figi's illness, and the 5-year-old suffered more than 300 seizures weekly and lost her ability to walk, talk or eat. Her heart stopped beating more than once during a seizure.
In desperation, her parents — her father a former Green Beret — took her to a neurologist who had experience prescribing medical marijuana.
In Colorado, the girl's parents found the Stanley brothers, who had extracted an oil from a strain of marijuana they cultivated that is low in THC — the chemical that makes you high — and rich in CBD, or cannabidiol. For reasons that no one quite understands, CBD appears to calm the electrical currents in the brain that cause seizures.
The effect on Charlotte Figi was immediate. The girl's seizures dropped to two or three a month. She walks and talks and eats normally. Her parents continue to give her a twice-daily dose of cannabis oil.
Until the Gupta documentary, the Stanley brothers had received 150 to 200 calls monthly from people interested in obtaining the oil from their not-for-profit dispensariesRealm of Caring, which they opened in 2009. After CNN aired "Weed" in August, they were deluged with 4,000 calls monthly from people interested in their specially cultivated cannabis.
"We weren't prepared," said Josh Stanley, who attended Wednesday's hearing along with Charlotte's mother, Paige Figi.
About 70 percent of the calls are from parents like Hintz and the Housers, whose children have untreatable epilepsy. The rest are from people with cancer, AIDS and other debilitating illnesses.
Josh Stanley estimates that 200 families have moved to Colorado to qualify for the marijuana, which they named Charlotte's Web.
He is haunted by the desperation in the voices of people who contact him.
"This could potentially help their child on a level never seen before," he said. "It breaks my heart that we can't help all of them."
The apparent success of the treatment for some patients has spurred change elsewhere. A New Jersey father of a child with Dravet syndrome cornered Gov. Chris Christie at a public event in September and pleaded with him to sign a bill allowing pediatric use of medical marijuana.
Several weeks later, the governor did.
The Epilepsy Foundation of America cautions that "research into medical marijuana and seizure control is not complete" and calls for more investigation.
The Housers have put their daughter on a waiting list to be part of a clinical trial at a New York City hospital involving an experimental drug like marijuana.
In Colorado, Stanley said he welcomes more research.
"We're not just hippies saying 'free the weed,'" he said. "We want our studies to prompt more studies."
Advocates for legalized medical marijuana think pressure from parents is starting to nudge lawmakers.
"It's really difficult for politicians to stand there and say, 'No, we are going to let your kid suffer because it is not politically prudent for us to do this,'" said Morgan Fox, spokesman for Marijuana Policy Project, a Washington, D.C., advocacy group.