As Gov. Andrew Cuomo sat down to ceremonially sign the state’s medical-marijuana bill into law, a Rockland County 10-year-old stood by his side.
Amanda Houser, of Suffern, suffers from Dravet syndrome, a rare form of epilepsy that begins in infancy and causes her to experience multiple seizures a day and adhere to a severely restricted diet.
With Cuomo’s signature Saturday, New York became the 23rd state to legalize marijuana for seriously ill or injured patients. And when he needed someone to introduce him for the ceremonial signing Monday in Manhattan, Cuomo turned to Amanda Houser and her mother, Maryanne.
“Hi, my name is Amanda,” she said, reading from a piece of purple construction paper that matched her sparkly dress. “I want to be a normal girl and I want my seizures. P.S. I want to be off this diet. Right everyone?”
Cuomo and top state lawmakers gathered at the New York Academy of Medicine on Monday for the bill-signing ceremony, which came two days after he officially signed the medical-marijuana legislation and about two weeks since the Legislature passed it.
In wrangling support for the bill — which has been debated in Albany for more than a decade — advocates had highlighted the plight of children with rare and severe forms of epilepsy, such as Amanda Houser.
Maryanne Houser said she had been considering moving to another state if New York didn’t act to legalize medical marijuana. An oil derived from cannabis known as “Charlotte’s Web” has shown promise in treating children with epilepsy.
“Her condition dictates where we can go and what we can do. It makes us feel powerless because we never know when the next seizure might strike or how bad it might be,” Houser said. “Medical marijuana offers us the chance to beat that, and we were prepared to move out of New York state if we needed to in order to get Amanda this treatment.”
When Cuomo sat down to sign several ceremonial copies of the bill, Amanda stood nervously over his right shoulder. A few bills in, he turned to Amanda, who grabbed on to the end of the pen and helped him sign a copy.
When he was done, Amanda sheepishly held her hands to her cheeks. Cuomo handed her the pen he used.
“And to Amanda, who is clearly a superstar,” Cuomo said in his remarks. “We were chatting before in the back room and she had it all coordinated. She had that beautiful dress on and the paper that coordinates with the dress. I’m going to pick that up and learn that from you.”
(AP photo / Seth Wenig)
From The Journal News’ Seth Harrison, here’s a video of the Houser’s discussing their battle last year: