ALBANY – When an amended version of the new medical marijuana law was passed on the floor of the State Senate in June, Wendy Conte was the first to jump to her feet in the visitors gallery overlooking the chamber to applaud.
Conte did so knowing the law would not take effect for at least 18 months – far too long to help her 9-year-old daughter, Anna, who needed immediate help.
Anna had a form of epilepsy that hit her with hundreds of seizures a day, and she battled these episodes constantly but cheerfully, her mother said.
But on Thursday night, Anna died.
“She just touched so many lives in so many ways, and she was an inspiration to help get this law passed,” Wendy Conte said Friday morning in an interview.
Advocates of the marijuana law agreed.
“The Conte family was really at the heart of this campaign. … They were absolutely pivotal,” said Julie Netherland, deputy state director of the Drug Policy Alliance, an advocacy group that has pushed for medical marijuana laws in New York for years. “Their love for Anna really fueled what they did, and it was evident when they talked to people about this issue.”
“My fear is that, in 18 months, some of the children will not be around to reap the benefits of this legislation,” the Orchard Park resident warned in an interview with The Buffalo News at the Capitol on June 19 just after the measure was approved.
Now, though grieving over her daughter’s death, Conte said she will return to the Capitol, urging Gov. Andrew M. Cuomo and other officials to expedite the availability of a strain of medical marijuana designed to help children with seizure disorders.
“This is a travesty. Three children passed away this week in New York. How many more children need to die before something is expedited?” Conte asked. “They can figure out a way to get this done. If they truly want to help these children, they’ll find a way.”
Face on legislation
Lawmakers and drug policy advocates credited Conte and Anna’s story with helping to put a face on the issue.
Cuomo and Senate Republicans for the past three years blocked the measure, but Cuomo and a number of GOP lawmakers changed their minds this year and approved the law.
Conte jump-started her push to get the law approved last year, when she wrote an article for The News’ opinion section. In it, she told the story of her daughter, Anna, and the rare form of seizures for which children with similar conditions were being treated with an oil-based form of marijuana in Colorado. The oil-based marijuana does not get its users high.
In March, The News published a story about Conte’s recent return from Colorado, where she traveled to get a driver’s license and apartment to become a Colorado resident.
“We’re on the waiting list. We’re just waiting for our plants to grow,” she said at the time.
One idea she was kicking around was to temporarily move to Colorado and then return to New York when its law became effective and the drug was available.
But on July 4, a couple of weeks after the law’s approval at the Capitol, Anna had a seizure that ended with her going into a coma. As her organs failed since then, her family was by her side, singing to her and reading her stories as they waited for the moments when the young girl would occasionally open her eyes.
Conte has been a selfless citizen lobbyist.
Sen. Diane Savino, a Staten Island Democrat, recalled that when she started pushing the medical marijuana bill in the Senate two years ago, she had help from patients suffering from cancer and other conditions. But it wasn’t until this year, when Conte and several other parents brought the stories of their children to the Capitol, that the issue moved in the Senate and with the governor.
Cuomo began sending signals in June that he would not accept any bill if it permitted marijuana to be smoked. He wanted only pill, liquid or other limited forms for the drug’s use for a certain number of medical conditions and diseases. Such an offer would have settled things for Conte and other parents lobbying for the form of the drug that would benefit their children. But she was committed to a broader coalition – including cancer and AIDS patients who wanted access to marijuana in a smokeable form – and she initially said she could not break from the group to support the Cuomo plan.
The Conte family was instrumental in moving two Republican senators from Western New York – Buffalo’s Mark Grisanti and Newfane’s George Maziarz – to yes votes on the legislation, according to Netherland, the deputy state director of the Drug Policy Alliance.
Netherland also credited the Contes with getting people to contact Cuomo and organizing a community forum that attracted 200 people and collected thousands of petitions sent to Cuomo urging his support.
“We are extremely grateful, but there’s a lot of reservations about the restrictions the governor is putting on the program,” Conte said a few weeks ago.
Among them, she said, was the wait time – she guessed it would be closer to two years or more – before the form of the drug her daughter needed would be made available in New York.
Anna’s rare syndrome
Anna was diagnosed with Dravet syndrome before she reached the age of 1.
She had numerous treatments in the Buffalo area, with hospitalizations lasting up to three months, and at some point in her life had been on every assortment of drug used to treat epilepsy.
With the seizures only worsening, Wendy Conte said she and her husband decided medical marijuana needed to be tried, based on reports out of Colorado.
Conte talked of other children dying from the condition her daughter had, and of living in fear each day that her daughter’s next seizure would be her last.
Thursday night, she posted on Facebook the sad news of her daughter’s passing.
“This evening we said goodbye to our sweet little Anna. After 9 yrs. of fighting, her little body just had enough. She is flying with the angels and most importantly she is seizure free forever,” Conte wrote.
In an interview Friday morning, Conte said no more children like Anna should die “because of a ZIP code,” and that New York needs to make an exception and quickly get the strain of the drug – known as Charlotte’s Web – to doctors in New York to dispense to children suffering from the rare forms of epilepsy.
Conte said her daughter loved to swim, ride horses, dance, ice skate and travel – all while taking into consideration her special health needs.
“She did more in her nine years than what many people do in a lifetime,” her mother said.
Conte also said she will be a part of an effort to persuade Cuomo to enact the law more quickly than the minimum 18-month period.
“Our fight’s not done. We’ll be back,’’ she said.