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Parker Salemme and his twin brother Jackson Salemme were best friends. The North Codorus Township boys were inseparable, according to their mother, Cara Salemme.

“My guy was a perfectly normal kiddo,” she said

In 2011, then-5-year-old Jackson caught a virus, leaving him with a form of epilepsy resistant to most drug treatments.

Now 9, he experiences hundreds of seizures a month and is non-verbal, Salemme said. The family has tried everything they can legally do to help their son live a comfortable life.

Even though Jackson is "medically fragile," the family wants the opportunity to try medical marijuana, which is illegal in Pennsylvania but has helped patients in other states. They hope some strain of it will help relieve Jackson's symptoms without the serious side effects of his current medications.

Unfortunately, a bill allowing doctors to prescribe medical cannabis in Pennsylvania remains stalled in the state House. Not even the U.S. Drug Enforcement Agency's announcement in late December that it was relaxing regulations on marijuana research has spurred reluctant lawmakers, who have put off voting on the bill since it got to the floor in October.

“Jackson has lost everything,” Salemme said. “It is incredibly difficult to watch your child deteriorate on these medications.”

Yet, while Jackson’s life is changed forever, his twin, Parker, is thriving, Salemme said. Parker is your typical third-grade boy, running around, chatting and having fun with friends.

“We always felt blessed to have twins,” she said. “The bond between them has definitely been broken though. It’s very hard to see that bond broken. It’s just not the friendship they used to have”

A different treatment: 

While Parker grows, Jackson will continue to need treatment and constant care, Salemme said. The North Codorus Township family has tried many medications recommended by the team of doctors that helps Jackson live.

“He’s on five medications right now,” Salemme said. “We know there are long-term side-effects of the medications, things like kidney damage, liver damage and cognitive difficulties.”

Salemme is an ambassador for Campaign for Compassion, a group of mostly mothers lobbying for the legalization of medical marijuana in Pennsylvania.

While there is no guarantee that medical marijuana would help Jackson, Salemme wants to make sure that patients who it would help would have access to the medication.

“There are hundreds of kids like Jackson across the state which this could help,” she said. “There are hundreds of adults with this need. We’re tired of being brushed off.”

Politicians take note: 

State Sen. Mike Folmer was approached by two mothers in 2013. The senator, who represents part of York County, heard their stories and couldn’t stand by any more.

“They left me with a plethora of information,” he said. “There are real medical benefits to cannabis. They’re not trying to get high. This is about their quality of life, their sustainability of life.”

The 60-year-old Republican introduced Senate Bill 3 in 2015. It passed the Senate vote 40-7 with three votes out on leave. The same bill, Senate Bill 1182, was passed in 2014 with a vote of 43-7.

“It was basically an identical vote,” Folmer said. “The first time it passed, it died over in the House of Representatives. I’m a little frustrated with the process.”

Currently, the bill is sitting on the House floor, waiting for a vote. Folmer said he thinks the bill has enough votes for it to pass right now if the representatives would stop putting it off.

“We never really talk face-to-face, so it’s very difficult to get a feel for where it’s exactly at,” he said. “It needs to happen sooner rather than later. This would add one more arrow in their quiver to battle their pain.”

Adding to the toolbox: The U.S. Drug Enforcement Administration (DEA) announced in late December it would be relaxing requirements on cannabis-derived research, according to a Pennsylvania Medical Society press release.

PAMED President Dr. Scott Shapiro said doctors across the state are on board with learning more about the medicinal uses of cannabis.

“If I prescribe a medication, I know the benefits, and I know the risks of it,” Shapiro said. “The problem isn’t the marijuana. The problem is the lack of research. There are no well-done studies on marijuana.”

With the newly relaxed requirements on cannabis research, Shapiro is hopeful the studies can get done, allowing doctors to add one more medication to their arsenal.

“Doctors and patients are on the same page on this,” he said. “We’d love to find out that marijuana can treat a lot of things. Patients trust us to give them good advice on medications we prescribe. We just don’t have that level of information right now.”

Salemme said doing this research will take a long time, making it difficult for patients to get the treatment they need.

“The benefit versus the risk is always there,” she said. “This is about seizure control and increased quality of life for Jackson. When you see other kiddos thriving on medical marijuana, you want to be able to have access to it.”

Salemme said she has thought about moving her family to another state, like Colorado, where medical marijuana is legal. However, she wants to stay in Pennsylvania to work with her son’s doctors to get access to medication that could help more than just her son.

“We have resources in Pennsylvania that will help with the research,” Salemme said. “This would just give those doctors that are out of options another one.”

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