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I never would have imagined this moment, but I can say with pride, with dignity, and without reservation that I am a mother fighting to get marijuana for my six-year-old daughter, Lorelei. This is no easy prospect because we don’t live anywhere near a place where real medicinal cannabis is legal: We live in Pennsylvania.
Every day can offer a new challenge for our family, but that also puts things into perspective. After a five year courtship, I married my high school sweetheart in 2004. In July of 2007, we had our first of three children. I had a career as a veterinary technician and a close-knit group of friends. Looking back now, life was busy but blissful and peaceful. We had no idea how things would change so drastically.
When Lorelei was just 22-months old, she began having these “staring spells”. They lasted just a few seconds and she quickly recovered, but as a mother there was no denying that something was wrong. So many people told me to give it some time, that she wasn’t quite two yet and that she was probably just daydreaming. I was not convinced. Even her pediatrician told me not to worry just yet and that we would explore the issue further at her two-year check up.
Reluctantly, we waited. By the time her check up came around, I had seen so many of the “staring” events that I was sure they must be some kind of seizure. Her pediatrician referred us to Children’s Hospital of Philadelphia (CHOP). On October 27, 2009, at 27 months old and just three days after the birth of her baby sister, Lorelei was given her original diagnosis, “childhood absence epilepsy“.
As far as epilepsy is concerned, this was a good diagnosis to have; in fact, we felt relieved. Children with this diagnosis are generally easily treated with their first or second medication, and most will outgrow this condition during puberty.
The first few months went by and the medications for what was supposed to be an “easily treated” form of epilepsy failed to control Lorelei’s seizures. We started seeing a different doctor at CHOP and after hearing Lorelei’s history and doing some further routine testing, she quickly changed Lorelei’s diagnosis to “primary generalized epilepsy“. This change in diagnosis carried with it many unknowns. This was not the “she’ll likely grow out of it” diagnosis that we had been so elated to receive. My fear for Lorelei’s future began to increase.
We continued with trials of prescription pharmaceuticals both singularly and in combinations, all with little to no success. At one point we went so far as to initiate the Ketogenic Diet at CHOP. This was a very difficult diet to maintain and Lorelei was repulsed by the oily, high fat foods that were being offered to her. By this point, Lorelei was nearly four years old and we had just had our third child. After four months on the Ketogenic Diet, another failed attempt at seizure control, we discontinued it.
I was really starting to feel discouraged. Lorelei was having so many seizures every day and her development was beginning to suffer. Her behavior and lack of impulse control was becoming a real issue. Most anti-convulsants have behavioral side effects, none of them good. This became a problem for interactions between Lorelei and her siblings; things were getting bad. Her social interactions with peers were almost nonexistent and she was shutting down in situations outside her comfort zone. She began displaying autistic-like tendencies and just before her fifth birthday, she was diagnosed with an autism spectrum disorder.
Things were not getting better, so it was time to take the bull by the horns. I started researching alternative methods of treatment for Lorelei. I took to the internet and found a huge library of information. I couldn’t pull myself away. I was obsessed with finding a new solution.
As I scoured the web a recurring theme began to emerge…marijuana, Marijuana, MARIJUANA. It was slapping me in the face with every search, and every time it did, I closed that window and moved on. Now, don’t get me wrong, it was not simply because it was marijuana, but because I was not going to have my six-year-old smoking pot!
Back in high school I wrote a research paper about marijuana and its medicinal benefits and have always carried that general information with me. Like many of us, I have always been a supporter of medical marijuana but up until recently there wasn’t a need for it in my family.
Then, about six months ago, I decided to start digging once again. This time my sights were set solely on cannabis therapy. I had found a few things about high CBD/low THC strains of marijuana, but nothing that I could confirm through a mainstream source.
On August 11, 2013 there was something concrete: CNN’s “Weed“, hosted by Dr. Sanjay Gupta, aired. He spoke with the parents of a little girl in Colorado dealing with nearly the exact same thing as Lorelei, except she was getting better. A special strain of cannabis prepared for her by local medical marijuana experts operating under that state’s law were keeping her illness amazingly in check.
My battle began the next day. We need this in Pennsylvania. We need this for Lorelei.
I spent the the whole week on the phone with my local state representative, Jim Cox; Governor Tom Corbett’s office; and of course Lorelei’s doctor at CHOP. I had the blessing of her neurologist to try this treatment IF it became legal in Pennsylvania. I had the general support of my state rep but when it came to Governor Corbett and the rest of the General Assembly, I got nothing but roadblocks and back-turning.
It is October 2013 and I have continued to fight. Believe me when I say: I don’t plan on giving up until my daughter gets the medicine she needs, marijuana.
My fight is not only for Lorelei but encompasses countless others across PA. Our medical marijuana bills are being held hostage by Harrisburg and we need to get them moving for thousands of patients here. House Bill 1181 and Senate Bill 770 have been sitting on the desks of legislators collecting dust, when they should be vehicles for changing the law. More than 82% of voters in PA support medical marijuana and more than 10,000 people have signed petitions at change.org addressed to Governor Corbett. Now we are starting new petitions focusing on state legislators. So, we still need all the help we can get! You can find out more at www.MMJ4L.com.
I am a wife, a daughter, a sister, a niece, a friend, a lover and advocate for animals and so much more…of all the facets of my life, the one that shines the brightest for me is being a mother. Now I have added medical marijuana activism to my daily routine and communities like Ladybud show me that I am far from alone. Thanks to all of the mothers and women working every day to make cannabis legal across America for children and adults, you have already been such an inspiration to me.
This is just the beginning!
Editor’s note: To contribute to a fund for Lorelei’s ongoing medical expenses, please CLICK HERE.