February 17, 2016
My Journey to UnitedOhio
by Heather Benton
When my daughter, Addyson, was nine months old, she had her first seizure. It was not what you thought a seizure looked like. Her eyes looked dazed and she appeared to be dizzy, but her body was not shaking. I was oblivious. After several doctors’ appointments and a referral to a neurologist, my 14 months old my perfect daughter had a diagnosis: Severe Intractable Myoclonic Epilepsy. As crazy as this is going to sound, I truly had no idea what that meant. I had no idea that there were different types of seizures beyond Grand Mal. I had no idea seizures would cause Addyson to be delayed. I had no idea that seizures would scare her or disrupt her daily activities. I surely did not know that seizures could take my child away from me. I had no idea.
The first medication Addyson was prescribed was Keppra. Three days after starting this medication, she started pulling her hair, biting her arms, screaming at the top of her lungs, crying for no reason and slamming her head into the wall. Out of frustration. Three days! Her neurologist told us that we should try to stick it out. He didn't believe it was possible to see reactions this severe in just three days. But I knew things weren't right. Addyson was always happy, and now she was miserable.
One night, a friend came over for dinner and mentioned an article about marijuana helping kids with seizures. As desperate as I was to find help for my daughter, I don't think I truly listened to anything my friend said that night. My mind was racing a mile a minute, thinking to myself that I couldn't believe she was recommending that I give my child marijuana! I could almost mentally picture Addyson smoking a joint. I was sure my friend lost her mind. While I had smoked my fair share of pot as a young adult, the stigma that surrounds this plant was burned in my own mind. I didn’t bother to investigate further for myself.
Only a few days later I received a text message on my phone: "Turn on CNN". It was the same story my friend was talking about - a little girl who was beating a catastrophic form of epilepsy, with marijuana. I looked over at my husband. His eyes were filled with tears. I was crying too. At that moment I knew in my heart that this was what Addyson needed.
One month later, we were well on our way to doing everything possible to get Addyson the help she needed. After taking the necessary steps to put Addyson on waitlists for cannabis in the legal state of Colorado, we turned our attention to elected officials in Ohio – begging for help so we wouldn’t be forced to leave our home.
Having to pack up and move to save your child is so much more than just losing your home. You’re removing your child from the people who love them the most – their friends and family. Should a child, my child, who has a 25% of not making it into adulthood, be stripped away from the people who love them to move across the country?
Our anger grew from the unfairness. We reached out to local media stations to try to catch the attention of our elected officials. We met with other families who were interested in medical marijuana for their sick children, and we began to fight for access hand in hand. Unfortunately, it felt as if we were getting nowhere.
In March 2015, our family was forced to make the decision to leave everyone we know behind and head to Colorado. We just couldn't wait anymore. Addyson didn't deserve to wait another moment for relief.
Once arriving and settling in Colorado, we were able to start Addyson on a transdermal THCA patch. I'm not sure what exactly we expected when we first put it on her ankle, but I remember looking at the clock. Hours passed. I remember turning to my husband saying "It has been six hours with no drop seizures, no tremors, no twitching... No anything." At that moment, I felt so excited for her.
The moment passed. The excitement turned into anger – and rage. I was angry that my daughter had to live the last two years of her life like a zombie while on pharmaceuticals, with little to no relief for her seizures. I was angry that this patch was illegal in so many states. The same patch that was now helping my daughter was unavailable to so many others that are also in need.
I decided to take our journey and my daughter’s success to a whole new level. I wanted to shout it from the rooftops! I started contacting our media connections. Shortly after, I was approached by Responsible Ohio to appear in a commercial. I was honored to be given the opportunity, to spread the word that marijuana was saving my daughter’s life. We felt strongly that supporting Issue 3 was exactly what was needed for patients to obtain safe access to tested medical marijuana.
In the process of supporting Issue 3, we also watched friends become enemies and groups divide. What once felt like a united community got flipped upside down. It felt like everyone was turning against one another. And then November 4th. The fight was lost. The patients were still left suffering.
When I was asked to join United Ohio, it gave me tremendous hope. It was an honor to be involved with a strong group of people. No matter our respective opinions on Issue 3, we were all coming together with the same goal of helping patients obtain legal access to
I'm excited to take part in this journey with United Ohio and continue to eliminate the stigma attached to marijuana, so that, one day, cannabis will be the FIRST medication to go to and NOT the last.