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Connellsville couple backs medical marijuana

| Sunday, Feb. 2, 2014, 1:33 p.m.
Sydney Michaels has Dravet Syndrome. Here, she is pictured with her dog the family received through 4 Paws for Ability. He is a seizure-detecting service dog.
The introduction of state Senate Bill 1182, the legalization of medical marijuana, has brought the slightest glimmer of hope to one local family. This past week Paul and Julie Michaels of Connellsville made her way to Harrisburg and appeared before the Senate Law and Justice Committee hearing on the Compassionate Use of Medical Cannabis Act where Julie Micheals talked about the benefits of medical cannibus and how it might just give her 4-year-old daughter Sydney the chance at a better quality of life

The introduction of state Senate Bill 1182, the legalization of medical marijuana, has brought the slightest glimmer of hope to one local family.

This past week, Julie Michaels of Connellsville made her way to Harrisburg and appeared before the Senate Law and Justice Committee hearing on the Compassionate Use of Medical Cannabis Act where she talked about the benefits of medical cannabis and how it might just give her 4-year-old daughter Sydney the chance at a better quality of life.

It was the first legislative discussion of medical marijuana since December 2009, when Democrats had a majority in the House. Republicans took control in 2010.

“Our daughter, Sydney, was born perfectly healthy, but on Dec. 31, 2009, during a bath, she suddenly began to have a violent Tonic/Clonic seizure,” Michaels said. “As we waited for an ambulance, we watched as her entire body turned blue — convinced our 3-month-old daughter was about to die.”

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

“By the time she turned one, she was experiencing every medically described seizure type, but aside from the Tonic/Clonic plaguing her, her Myoclonic clusters of seizures were (and still are) her worst enemy,” Michaels said. “When these clustered Myoclonics begin, she experiences a seizure every five seconds, and the cluster can last for several hours. There are days where she is seizing all day long.”

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

“At one point, our baby was on five different antiepileptic drugs — each that had its own slew of side effects that went with it,” said Michaels. “By 7 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.”

Paul and Julie Michaels were soon to find 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.”

Sydney was diagnosed with Dravet Syndrome, which is a condition where 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.”

Sydney is now 4 years old and is on three anti-epileptic drugs which offer her no relief. She has tried and failed using more than 13 anti-epileptic drugs. She typically has around 3,000 seizures weekly and has been taken by medical helicopter from her home to Pittsburgh six times in the last three years for seizures that have lasted anywhere from 45 minutes to one and a half hours.

With a sense of urgency, Michaels explained that in the past eight weeks, seven children who suffered from the same condition as Sydney, have passed away. Almost all of them were under the age of five.

Michaels said 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 and is not smoked.

“You could smoke as much as you wanted of cannabis and you would not get high,” Michaels added.

Because Colorado has legalized the use of medical cannabis, there is a study group called Realm of Caring that is finding the effects of medical cannabis in relation to controlling seizures.

“There are over 300 kids in the study right now and 96 percent have responded to this plant,” Michaels said. “Their seizures have decreased on average up to 88 percent.

Josh Stanley, a founding member of Colorado-based medical marijuana nonprofit Realm of Caring, called Pennsylvania's proposal, “the best bill I've ever seen” as far as the regulation, distribution and licensing of medical marijuana. His organization makes strains of marijuana designed to treat illnesses without the psychoactive element of THC, shown to lessen seizures in children with intractable epilepsy.

“Illness doesn't stop with elephants or with donkeys,” Stanley said, referring to the political debate. “It doesn't care.”

“Senate Bill 1182 will give our child a chance to experience life,” Michaels said. “Due to her many seizure triggers, she is pretty much a prisoner of her home. If there is not a change, Sydney will never be able to tolerate a school environment. Medical cannabis can be that change for Sydney. We strongly urge all Pennsylvanian legislators and Gov. (Tom) Corbett to support this bill.”

State Sen. Richard Kasunic said he read the story of Sydney Michaels three times over.

“It's a heartbreaking situation,” he said. “If you have any compassion at all, you want to reach out and help. I want to help her and others like her and if there's something that I can do, I want to do it.”

With the introduction of the bill, the first step of the process was the hearing to gather information on the issue.

“The next step is for the committee in charge — I think the committee of law and justice — to have a hearing and take a vote,” Kasunic said. “If the majority of the committee members vote in favor of it, it will be brought to the Senate floor for a vote.”

If the Senate passes the bill, it will then move on to the House of Representatives who will go through the exact same process. If at any point in the process in either the Senate or the House the bill does not get a majority of votes, it dies.

If both the Senate and the House approve the bill it goes before the governor to sign off on, but he still has the power to veto the bill if he so chooses.

“I think that's what we're here for — as far as human beings — to help our fellow man, and if this can help in some way, I want to do that,” Kasunic said.

Medical marijuana is legal in 20 states and the District of Columbia. Washington and Colorado voters approved referendums legalizing recreational use.

Corbett has said he would not sign a bill legalizing medical cannabis without further research from the Food and Drug Administration.

Rachel Basinger is a contributing writer.

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