Newspaper article Pittsburgh Post-Gazette (Pittsburgh, PA)

Beaver Falls Family Makes Case for Cannabis the Mcgurks Lobby for Legalization of 'Medical Marijuana' for 2 Daughters, Who Suffer Multiple Seizures a Day

Newspaper article Pittsburgh Post-Gazette (Pittsburgh, PA)

Beaver Falls Family Makes Case for Cannabis the Mcgurks Lobby for Legalization of 'Medical Marijuana' for 2 Daughters, Who Suffer Multiple Seizures a Day

Article excerpt

On a sunny September day, the McGurk family joined a crowd that gathered on the steps leading up to the State Capitol in Harrisburg.

They were six strong. Joe and Danielle McGurk stood with their children Lena, 18, and Chandler, 15. Their younger daughters Leah, 12, and Olivia, 9, sat in strollers. Leah's service dog, a Labradoodle named Charlotte, made the count seven.

They'd made the trip to Harrisburg -- more than four hours from their home in Beaver Falls -- about five times in the past year, to lobby their lawmakers to legalize the medical use of cannabis in Pennsylvania. On that September day, they were joined by hundreds of others making the same request.

Joe and Danielle McGurk believe that a specific strain of cannabis can help their daughters Leah and Olivia, who both have Dravet syndrome, a rare form of epilepsy that can cause hundreds of seizures per day.

They want their daughters to have a chance to try a treatment that they say has produced dramatic results for families in Colorado, where a cannabis strain called "Charlotte's Web" is available.

"This may not be a cure," said Mrs. McGurk over lunch later that day. "It may not work. But, I just want the opportunity to try it. Because what if it does work? We've lost all this precious time already."

The McGurks are still waiting. Just over a week after their trip to Harrisburg -- for a rally in support of Senate Bill 1182 to legalize the use of cannabis derivatives such as oil extracts for certain conditions -- the bill passed, 43 to 7, with bipartisan support.

"This is not about marijuana. This is not about cannabis," said Republican state Sen. Mike Folmer of Lebanon, a prominent supporter of the bill who spoke at the Sept. 15 rally. Rather, he said, it's about patient care.

"All we want is simple medicine," said state Sen. Daylin Leach, a Democrat from Montgomery County outside Philadelphia.

But the legislation faces an uphill battle. There is support in the House, said Mr. Folmer, but the challenge will be getting it on the floor for a vote. In May, Gov. Tom Corbett came out in support of hospital studies about cannabidiol, a component of marijuana, for children with seizures. But he has not thrown his support behind Senate Bill 1182.

The trips to Harrisburg have worn down the McGurks. Olivia's medication often makes her carsick. At the September rally, the sun was triggering Leah's seizures, Mrs. McGurk said.

"This trip is getting to be a bit much," she said. They want to come to Harrisburg for a celebration, and don't think the decision should be up to politicians about how best to treat their children.

"This is a right to save our children," she said. "This shouldn't be a fight, I feel."

Desperate families

At the rally, there were also people with chronic back pain, with HIV and with post-traumatic stress disorder pushing to legalize medical marijuana.

But for families with children suffering with Dravet, the possibility of cannabis as a treatment has been particularly compelling. Mary Anne Meskis, executive director of the Connecticut- based Dravet Syndrome Foundation, said there has been a "small exodus" of families out of states where medical marijuana cannot be used and into Colorado to pursue treatment.

"That kind of shows how devastating the disease is, and how desperate parents are just to find something for their child," said Ms. Meskis of Chicago, who has a 14-year-old son with Dravet.

Dravet, said Ms. Meskis, is a "severe and catastrophic form of intractable epilepsy." There is no cure for it. Most children face developmental delays and require round-the-clock care.

Treatment to prevent or control seizures requires multiple medications that can have negative side effects such as liver damage, sleep problems, weight gain and others. Finding the right combination is an "awful dance that these families have to do."

For the McGurks, the dance is in duplicate. …

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