After tough fight, the wait goes on

Medical marijuana advocates lament the lead time of program
By Benjamin Oreskes

Albany

Kathy Annable stood next to a state trooper who was guarding the glass doors to Gov. Andrew Cuomo’s offices. She and other advocates stared at their cellphones watching a livecast of the news conference that was taking place a few dozen yards away.

Just down the corridor, Cuomo was announcing an agreement to create a system to grow and distribute medical marijuana. Annable’s 11-year-old daughter Kaylie, who suffers from seizures caused by a rare condition called Aicardi Syndrome, sat in a wheelchair next to her.

Then Kaylie began to spasm, and her mom knew it was bad. Annable recognized the onset of what she called a “respiratory hold” – as if the girl had taken a deep breath and couldn’t exhale.

“It becomes a cycle where she’ll just keep seizing and seizing and seizing,” said Annable, from Syracuse. “It just becomes more life-threatening, and I can’t tell if she’s going to make it through or not.”

Friends and fellow activists helped bring Kaylie out from the crowded corridor and into the adjacent War Room; they called 911.

After the news conference ended, the members of the state Compassionate Care Coalition took stock of what Cuomo had announced as seven EMTs surrounded Kaylie. Her eyes were closed, an oxygen mask covered her face and a large machine monitored her vital signs.

As the activists assessed the news, others shushed the crowd so as not to disturb Kaylie, who remained silent and still. Seven-year-old Julie Emerson, who has epilepsy, fanned Kaylie as the EMTs peppered Annable with questions about her daughter’s condition.

“I’ve seen it happen like this before,” Annable told them.

In the day before this serious turn, Annable estimated that Kaylie had suffered more than 30 seizures – up from the eight to 10 a day she usually has. She believes giving her daughter medical marijuana could reduce that number.

It hadn’t been a normal day Thursday, for the adults or children who had come to the Capitol this week pressing for the Compassionate Care Act.

At midday Thursday, the advocates had rallied outside the Senate, with Julie Emerson once again by Kaylie’s side. As Julie’s dad, Tim Emerson, spoke to advocates and onlookers, she picked up a stuffed dog that had dropped from Kaylie’s wheelchair and placed it in her lap.

“We’re not looking at our kids for guinea pigs, and we’re not looking to do something illegal,” Tim Emerson, who had traveled from Rochester with Julie and his wife Christine, said to a group of about 30 protesters – fewer than had appeared at the Capitol on Wednesday. “Honestly, we should not even be forced to go down that route.”

When the speeches had ended, Annable followed behind as Julie pushed Kaylie’s wheelchair to a bank of elevators so they could deliver thousands of signed petitions to the offices of Cuomo and the Senate leadership. With the almost breezy air of mothers commiserating in a schoolyard, Annable and two other women discussed how during the rally several of the children, including Kaylie, had suffered seizures.

On the second floor, the advocates stood outside the executive chamber chanting for the governor to pass the bill.

Two hours later, the deal was announced. And then Kaylie seized.

In the War Room, the EMTs gave the girl a powerful Valium-like narcotic that shut down her spasms. Within an hour, her eyes opened and Kaylie waved her arms in the air.

Julie looked down at her friend. “Hi, Kaylie – are you feeling better?” she asked.

Christine Emerson choked up as she explained her mixed emotions about the deal that had been struck between Cuomo and legislative leaders. The program will begin to dispense marijuana no sooner than the end of 2015.

“I’m grateful that my daughter will hopefully, eventually get the treatment she needs – and I’m still looking at another two years before I have medicine in hand,” she said.

After determining that Kaylie didn’t need to go to a hospital, the EMTs packed up and left. The activists milled around talking about what to do next. Should they wait for the vote on the compromise bill, which might not happen until Friday?

Julie continued to sit with Kaylie and her mother as fellow activists came by to check on her status, and talk about the agreement.

Annable stroked Kaylie’s arm.

“My daughter’s life is today. It’s not tomorrow – it’s today,” Annable said. ” … She might not be here tomorrow, or certainly not be here 18 months from now.”