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Lorelei-677x316_c

Medical marijuana could ease a little girl’s suffering

by 420insightAugust 12, 2014

By THOMAS NADZAM

I have lived in Bucks County nearly all my life. I grew up here, raised a family here and have always enjoyed the life I have here.

Almost seven years ago, my youngest daughter had her first child, my first grand baby. Her name is Lorelei and she quickly became my whole world. Lorelei now has a younger sister and brother, and I adore them all.

Lorelei started having seizures five years ago at 22 months of age. Since then, epilepsy has consumed her life. Doctors, hospitals, medications and surgery are the norm for her. Lorelei has been on over a dozen medications, alone and in combinations. Despite all the doctors have tried, she still has roughly 600 seizures a day … every day.

My daughter, Dana, has researched tirelessly to find other options. The one thing that she kept coming back to was medical cannabis (marijuana). This was March 2013, and there was nothing really being said in the news about it yet. Dana was finding a few anecdotal stories here and there from around the country.

It wasn’t until Aug. 11, 2013, that she knew there was something to this controversial treatment. A CNN documentary call “Weed,” hosted by Dr. Sanjay Gupta, told the story of a 5-year-old girl named Charlotte who lived in Colorado who was being treated for her seizures with cannabis. She was being given a strain that was extremely low in THC (the psychotropic part) but very high in CBD (a non-psychotropic part), so there is no “high” associated. It is also administered in oil form, so she was able to take it orally rather than smoking it. Little Charlotte was having 300 severe seizures a week and is now having only one to three in an entire month. That’s a 99 percent reduction.

After hearing Charlotte’s story, my daughter started contacting her legislators to see what could be done about getting this medicine for Lorelei. She hit a bunch of dead ends. Everyone told her that cannabis is illegal in Pennsylvania, so she was out of luck.

Dana teamed up with other mothers across the state who also have children with medication-resistant epilepsy. In November 2013, Dana and a fellow mom approached state Republican Sen. Mike Folmer (Lebanon County) asking him to write a new piece of legislation to legalize medical cannabis in the commonwealth. Folmer was a bit hesitant at first, but after much research he was on board to help. Together with many experts from doctors and scientists to those who have helped with legislation in other states, they crafted SB 1182. It is a wonderful piece of legislation. It’s strict and regulated but allows access to those in need with a doctor’s recommendation.

These moms could have fought for allowing access to the previously mentioned strain and it would only help their children. Instead, they have made it their mission to ensure that medical cannabis can be safely accessed by people with many different medical conditions. This would include those suffering with cancer, our brave veterans with post traumatic stress disorder, people suffering from MS, Alzheimer’s, Parkinson’s, epilepsy and more with a recommendation from their health care physician.

SB 1182 was introduced in December 2013 and passed through the Law and Justice Committee in June. Our family along with patients and advocates from all over the state were hoping to see this bill passed out of the Senate and House before summer recess, but that hope has been snuffed out.

The Legislature will reconvene on Sept. 15 but until then my granddaughter, Lorelei, will have suffered approximately 46,000 additional seizures. The sick people of Pennsylvania don’t get to take a break from their illnesses.

My heart aches every day for Lorelei. I see what these seizures do to her. I see how it affects our whole family. I’m poppy; I’m supposed to be able to fix everything. I can’t fix this. If doctors can prescribe dangerous and highly addictive drugs like Oxycontin, Vicodin, Percocet and morphine, why can’t legitimately ill people use cannabis under the supervision of their doctor? The fact that we allow our people to suffer at this day and age is deplorable.

I have been and will continue to pray that the leaders of our state will listen to the 85 percent of its citizens who want medical cannabis legalized. Please don’t let my Lorelei suffer any longer.

Please contact your legislators and tell them that you want them to vote yes on SB 1182 and you want them to move quickly.

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