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Connellsville mother leads charge for medical marijuana

| Friday, Jan. 23, 2015, 1:31 a.m.
Sydney Michaels was diagnosed with Dravet Syndrome at 11 months old.
Sydney Michaels was diagnosed with Dravet Syndrome at 11 months old.

Julie Michaels of Connellsville has been on a crusade to raise awareness among state legislators as well as the public about the benefits of legalizing medical marijuana.

Michaels has a very special reason to keep her crusade going — her 5-year-old daughter Sydney.

Sydney was diagnosed with Dravet Syndrome soon after she was born.

With Dravet syndrome, seizures are rarely controlled by medication.

“She will never outgrow Dravet. There is no cure, and the mortality rate is high,” Michaels said. “In short, Dravet syndrome is one of the most catastrophic forms of epilepsy that exists.”

Medical cannabis is not a cure, but it helps provide significant relief for those affected by seizures, lowering the daily number from more than 300 to a more manageable count.

Michaels, along with Campaign4Compassion, an organization for parents with children who have Dravet, have been hard at work to keep the ball rolling on the legalization of the drug.

And she has a local state senator in her corner.

In January 2014, Senate Bill 1182, which would legalize the use of medical marijuana, was introduced. It passed by a vote of 42-7 on Sept. 24.

In order for it to become a state law, the House of Representatives needed to pass the bill as well and the governor would have had to sign off on it.

Unfortunately, with just a few days left before legislative sessions ended before the holidays last year, the House did not take any action on the bill.

Because of that, the process must begin all over again.

Recently, state Sens. Mike Folmer and Daylin Leach reintroduced the bill.

Newly elected state Sen. Patrick Stefano of Bullskin is co-sponsoring.

A fight for Sydney

Sydney was born healthy. On Dec. 31, 2009, during a bath, Michaels remembers how the small child suddenly had a violent tonic-clonic seizure. As the family waited for an ambulance, they watched as her entire body turned blue. They were convinced their 3-month-old daughter was about to die.

That was the first of hundreds of thousands of seizures that Sydney would endure over the next four years.

The drug path to try to regulate, control or prevent her seizures began when the drug Keppra was started.

“At one point, our baby was on five different anti-epileptic drugs — each that had its own slew of side effects that went with it,” said Michaels. “By seven months of age, we began to watch our daughter regress. She lost the skills of sitting up, rolling over, holding her head up, and even smiling.”

The family soon found out that just about everything triggered Sydney's seizures: from sounds, lights, temperature changes, heat, going to the bathroom, a stranger talking and even a bath.

“Because of Sydney's triggers, we could barely leave the house with her,” Michaels said. “We had to put dark wood blinds in all our windows, and we had to put in whole-house air, so Sydney could tolerate the warmer months.”

Michaels explained that medical cannabis is not the part of the marijuana plant that causes a “high.”

“A hybrid plant, called ‘Charlotte's Web,' has been bred to be high on CBDs (the part extracted from the plant that helps control seizures) and low on THC (the part of the plant that causes one to get ‘high.')”

The medical cannabis is in an oil or pill form. It is not smoked.

Stefano first became interested in the subject when Michaels attended a Connellsville Rotary meeting to speak about her daughter.

“Senate Bill 3 sets up licenses for farmers to grow and manufacture the special strains of marijuana that are high on CBDs and low on THCs,” Stefano said. “And just to be clear, we're talking about the pill form here. We are not trying to legalize marijuana that you would buy to smoke and get high. This must be prescribed.”

He added that medical cannabis isn't something that helps just those with Dravet.

“It's for any medical reason, including cancer, that a doctor would feel that it's needed,” Stefano said. “There are studies coming out of Israel right now about how it can help kill cancer cells, and I'd like to know more about that as well.”

Stefano explained the bill will go into committee and take the necessary steps before coming to the Senate floor for a vote.

Michaels said the House of Representatives is getting ready to drop a sister bill to Senate Bill 3.

“Basically, it will be an identical copy of what is in the Senate,” she said. “It's a way of speeding up the process. If the House already has a bill, too, then they can get it assigned to a committee and they can begin to hold the hearings that they want to hold.”

Before the recent elections, Michaels was in contact with Ryan Warner, a candidate for the 52nd House seat. Warner won that seat. Michaels said she spoke through Facebook to Rep. Ryan Warner before the 2014 elections.

“Once he saw a video that included Sydney's doctor explaining why he was fully behind our decision to pursue (this), he said, ‘Sydney would have a friend in Harrisburg,' ” she said. “I still need to meet with him face to face to get a confirmation that he will definitely be voting yes when this bill hits the House floor.”

State Rep. Tim Mahoney was a co-sponsor of the House bill last legislative session. Michaels is hopeful that he will be signing on again as a co-sponsor this legislative session.

For now, she and her group continue the campaign to educate others on the subject.

She encourages the public to write Stefano to thank him for his support and to write local House representatives Mahoney and Warner.

Stefano said he will be in contact with House members throughout the process.

“If the benefits outweigh any detriment, why are we, the government, getting in the way?” Stefano asked.

Rachel Basinger is a Trib Total Media contributing writer.

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