NEW YORK: Standing patiently in the chamber of the Nassau County Legislature, Jeff Decker had his hands full as his 7-month-old daughter Mabel squirmed in his arms. His wife Carly Tangney Decker and his mother-in-law Cindy Tangney were testifying at a public hearing held a week before Christmas on a bill to authorize the medical use of marijuana in New York.
Mabel has a rare genetic disorder that causes her to suffer severe epileptic seizures. Her family had driven down from upstate Kingston to tell the Assembly Health Committee’s chairman Richard Gottfried (D-Manhattan), who is co-sponsoring the bill, known as the Compassionate Care Act, with state Sen. Diane Savino (D-Staten Island), that they were leaving that night for Colorado because they had learned that they could legally obtain a marijuana derivative there that had shown promise in treating early onset epilepsy.
“Maybe when we get there, it won’t work,” said Mabel’s mom, fighting back tears. “But at least at that point we can say we did our best—we tried everything.”
Known as Charlotte’s Web, this special strain of marijuana oil has been the subject of a recent article in The New York Times as well as a CNN special by Dr. Sanjay Gupta, which detailed how young Charlotte Figi of Colorado had benefitted from its use. In fact, Charlotte’s mother, Paige Figi, had flown in from Colorado to tell the Assembly committee hearing how the medical marijuana had helped. At one point, Charlotte had been having hundreds of grand mal seizures a week.
“From that first dose, she went seven days without a seizure,” Paige Figi said at the hearing.
Also in Mineola was Joel Stanley, who runs the medical marijuana dispensary in Colorado Springs with his brothers that specializes in providing Charlotte’s Web. He told The Times that this oil is low in the psychoactive ingredient THC and high in cannabidiol, or CBD, which is reportedly beneficial. Stanley and his brothers also run the Realm of Caring Foundation, a nonprofit organization that helps subsidize the cost of the drug for qualified needy patients in Colorado, which can cost $150 to $200 for a month’s supply.
Carly Tangney Decker told the health committee hearing that one of the drugs her daughter was prescribed would eventually cause blindness. Uprooting their lives to give Mabel Charlotte’s Web seemed like a better alternative.
“New York won’t allow us to try a medication that is working for many other people,” Carly said. “Please give us the opportunity to try this drug in the comfort of our own state, in our own home, with our families.”
One of the Republicans on the health committee, Dr. Steve Katz (R-Westchester), a veterinarian and an epileptic, told Mabel’s parents, “All I can say is I wish you Godspeed, and that we will do everything possible to bring you home.”