Jody Perkins’ son Robert suffers from Lennox-Gastaut syndrome. It’s a severe form of epilepsy that left Robert having as many as 1,000 seizures a day. Jody started him on CBD oil in January 2016 and it’s reduced his seizures.
Jody used to get messages from Robert’s teacher or school regarding him having seizures, Decatur Daily reports. She’d sit and wait for updates, sometimes waiting an hour or more. But after Robert started using CBD oil, alerts from the school came less often.
Leni’s Law prevents those in possession of the CBD oil from being prosecuted. However, only those with epilepsy and, as the state defines, a debilitating condition defined as “a chronic or debilitating disease or medical condition including one that produces seizures for which a person is under treatment”.
Perkins said, “I was watching my child dying two years ago. In the last five months of 2015, he had 50,000 seizures. Now he’s healthy, he’s thriving, he’s alert, he’s aware and he’s happy. Leni’s Law gave us affirmative defense, but affirmative defense is not enough. We need more.”
While Perkins can understand the hesitance in legalizing medical marijuana, even she struggled with understanding how it’s medically beneficial, but she still believes that Leni’s Law doesn’t go far enough.
Jody first became aware of medical marijuana working for seizure disorders by watching ‘Weed Wars’ on Discovery Channel back in 2011.
Perkins said, “I’m watching this show thinking this is a viable option, but, wait a second, my dad told me my brain would fry in a frying pan if I touched this stuff, and I’m going to give it to my kid? But then I started weighing the drugs I was already giving him, drugs known to damage the body and the brain. I did research and proposed the treatment to my family. Some of them thought I was psycho crazy and that I was just being that mother that needed an answer. No, I didn’t need an answer, I needed to help my child.”
Representative Mike Ball received an email from a parent wanting to use medical marijuana for her 14-month-old granddaughter. He began researching medical marijuana extensively after that.
Representative Ball said, “I was very anti-marijuana, and I still am for recreational purposes, but I also am always willing to examine evidence and rethink my position. The more I looked at it, the more I couldn’t think of a reason not to do it other than it was bad politics. And, really, that’s not a reason. When you’re talking about innocent people suffering and you’re talking about life and death, there’s a time you’ve got to throw the politics out the window and say, if this beats me, it beats me.”
Perkins waited another 3 years before her family would agree to try the CBD oil treatment. In that time spent waiting, several states legalized medical marijuana. Then, Dr. Sanjay Gupta’s documentary ‘Weed’ aired and more attention was brought to medical marijuana. This prompted Representative Ball to start working on Carly’s Law, which also allowed for a $1-million CBD study at the University of Alabama – Birmingham (UAB).
Robert’s health got worse waiting for something to happen. He couldn’t travel to states where medical marijuana was legal.
Perkins said, “We had waited too long, and we needed help instantly. We were going to lose him to one of these seizures. We were desperate at that point and did the only thing left that the medical community could do for us. We split his brain in half.”
Following this, Jody enrolled Robert in the CBD study taking place at UAB. The oil provided via the study, however, didn’t help Robert. He was still having seizures, so he was pulled from the study in 2015.
Perkins said, “It was very evident that cannabis could help Robert, just not in this form. We left the trial to find what he needed. My brain knew he needed whole plant. He needed some level of THC. Whole plant cannabis oil can stand alone as a treatment. Many children have proven that, and Robert will eventually.”
So, in January 2016, they tried something different. Robert started taking 30mL of CBD with THC three times daily. The results were near immediate. His seizures decreased, and so did the amount of medicine he was taking. He’s stopped taking one of the medications and is only taking 1/3 as much of the other. His vagus nerve stimulator was turned off in August 2016.
On a bad day, Robert has maybe 10 seizures a day, not the 1,000 daily he used to have.
Teacher Jessica Harpe has been a witness to Robert’s transformation.
Harpe said, “In the beginning, Robert was not engaged with other people. He was just kind of living and not really thriving. He’s so much more aware now. He’s happy, he laughs, he engages with us. He loves to give hugs. And everyone loves receiving Robert’s hugs.”
Robert and his mom began lobbying for Leni’s Law last year. Representative Ball began working on Leni’s Law after Carly’s Law proved to be too restrictive.
Ball said, “I could see joy on that child’s face. I could see animation. It came to me like a flood that we were going to do Leni’s Law. I knew what was going to have to be in the bill. I knew it would be written, not by lobbyists or the special interest groups, it was going to be exactly what the families wanted and needed. And I knew it was going to pass.”
Ball also said, “The big thing that needs to happen is the Feds need to move cannabis from Schedule 1 to Schedule 2. It’s difficult to even do research and study Schedule 1 drugs.”
Perkins said, for parents of epileptic children, that, “I think for parents of children with epilepsy, you can’t prepare for the one they don’t come back from, but you’re always thinking about the one they don’t come back from and that’s why you fight so hard to stop the seizures.”
The fight in Alabama continues to make changes to marijuana law at the state and federal level. Both Jody Perkins and Representative Ball realize that marijuana needs to be rescheduled at the federal level so that more research and studies can be done.