This 3-year-old is doing the unthinkable: bringing the Ala. legislature together
Carly Chandler is a 3-year-old from Birmingham who suffers from an extremely rare neurological disorder called CDKL5 that causes her to have daily seizures. There are believed to be less than 700 people in the world with the disorder, and there are only a couple hundred known cases in the United States.
Carly’s seizures are particularly difficult to control. Individuals with CDKL5 often do not see the frequency of their seizures decrease with traditional medical treatments. However, a significant percentage of CDKL5 patients who take marijuana-derived cannabidiol, also known as CBD, experience drastic improvement. CBD comes in oil form and has none of the intoxicating effects of marijuana that might make legalization susceptible to abuse.
Epilepsy Foundation President and CEO Philip M. Gattone and Epilepsy Foundation Board of Directors Chairman Warren Lammert released a joint statement several weeks ago saying “nothing should stand in the way of patients gaining access to this potentially life-saving treatment.”
Right now, Alabama law is standing in the way. But that may change soon if “Carly’s Law” is passed by the legislature sometime during the final 7 days of the 2014 session.
While Carly has been the face of the movement to pass the bill, it is her parents who have been the driving force behind the scenes.
Carly’s father, Dustin, recently sent an email to members of the Alabama House and Senate, and it quickly became one of the most-discussed issues among members of both parties. Here’s an excerpt from the email:
Since we don’t know how long she will be with us, my wife Amy and I said we were going to give Carly the best quality of life we could possibly give her no matter what. Giving Carly the best quality of life is what led me to this journey.
Carly has tried over 8 Anti-Epileptic Drugs or AED’s and none of them have stopped her seizures. All the AED’s that she has been given have had bad side effects with some of them possibly being fatal.
As we looked for answers we heard about a specific strain of Marijuana that was high in CBD and low in THC called Charlotte’s Web. Charlotte’s Web comes in an oil form and is given orally. Since there are no psychoactive properties there is no way to get “stoned” by taking it. It has shown to be 80-85% effective in children in not only stopping seizures, but also improving cognitive abilities… But, as you know, it is illegal in the state of Alabama.
Since then, Carly’s law has overcome the knee-jerk reactions to “marijuana legalization” (which we have established this is not) and is now on the verge of coming up for a vote in the senate.
Supporters of Carly’s law flocked to the state house this week in hopes of witnessing their bill’s passage. But it was too far down the senate’s agenda. The body adjourned for the week without getting to the bill, but a spokesman for Senate President Pro Tem Del Marsh said they plan to bring the bill up for a vote this coming Tuesday.
When they do, there’s a good chance we’ll witness something we haven’t seen very much this sessions — Republicans and Democrats coming together to pass a bill that will have a profound and direct impact on Alabamians’ lives.
We’ll have a beautiful 3-year-old girl and her persistent parents to thank when that happens.
Here are the faces of a few other Alabamians who would be directly affected by this legislation:
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