Three-year-old Carly Chandler lives in Birmingham with her parents, Dustin and Amy, and her brother, Colton. However, despite her young age, her name already has a place in history.
This year, in the recent state legislature, Carly's Law passed, allowing medical marijuana in the form of CBD 10, a cannabis-plant derivative, to be used as medication for diseases, such as epilepsy, and to treat seizures.
Carly has been diagnosed with CDKL5, meaning she has a mutation in the cyclin-dependent kinase-like 5 gene. This mutation causes severe neurological disorders and developmental delays. She suffers sporadic seizures, sometimes up to 12 per day.
Carly is one of approximately 700 people diagnosed internationally and one of approximately 300 people domestically.
For her first eight weeks of life, Dustin said she was as perfect and typical as any newborn.
Now, Carly is legally blind. She can't walk, talk, feed herself or sit up on her own, and her story is changing our state.
Dustin said his family's journey began with Sanjay Gupta's CNN special documentary called "Weed." He said he watched it and, like any normal father who deals with a child's pain, he immediately clung to the idea that something could be used for seizure control and potentially for cognitive development.
"I looked around and saw that it wasn't available because of what it was," Dustin said. "That kind of lit the torch."
The Chandlers' interest was in a non-psychoactive oil that comes from a cannabis plant high in cannabidiol oil and low in tetrahydrocannabinol (THC), the mind-altering chemical in cannabis.
According to Dustin, the Realm of Caring Foundation breeds several different strands of this plant and said it has the potential to be 80-85 percent effective.
"That's the interesting side to all this, we said it was a God thing," Chandler said. "A law enforcement, ex-Alabama Bureau of Investigation officer wrote the first marijuana-extract bill."
That ex-ABI officer is Rep. Mike Ball, R-Madison. On Oct. 13, 2013, at 1:49 p.m., Ball received an email from one of his constituents asking him to look at this CBD oil.
"In my career, I'm in law enforcement," Ball said. "I am certainly not one of those people that support full legalization of marijuana. I am very concerned with the psychoactive properties that are there."
However, Ball said this oil gives relief to some of the children and adults who need it. According to Ball, its necessity gave the legislation a sense of urgency.
"The more I learned, the more I realized it was something that had to be done," Ball said. "I tried to put it out of my mind for a while, but it was just one of those nagging things that just stays with you. I began to realize, in a few weeks, that it was spiritually driven."
From there, Ball used his law-enforcement and legislation experience to draft the bill with law enforcement in mind.
"The prayers that have gone up for these children brought this on," Ball said. "There was a force. A force that is very old, very powerful that has been working through the ages that responded and made it happen. It's so real to me, but never before so intense, so obvious.
"There's so much potential in this," Ball said. "Now, with the medical people - their attention is on it."
Jerzy Szaflarski, part of the University of Alabama at Birmingham group studying the oil, confirmed CBD oil has minimal amounts of THC and more than 97 percent of CBD.
"We do not know exactly how it works," Szaflarski said. "The goal is provide the medication, or the extract, to patients with epilepsy in the state of Alabama who have not responded to standard therapies and who are potential candidates for this treatment."
UAB will work with Children's Hospital to administer the drug to children under physician supervision while they monitor the impacts.
According to Szaflarski, patients potentially might receive dosages three times per day, in amounts dependent on factors such as his or her body weight. It will be ingested as an oral mediation.
Rep. Patricia Todd, D-Jefferson, was the original sponsor of the bill and worked with Ball to tailor Carly's Law.
"It morphed into a perfect bill," Todd said. "It was incredible that we passed it without any opposition and people were enthusiastic about it. It was a great experience. Probably the best thing we have ever done in the legislature."
According to Todd, UAB's study won't include the normal clinical trial of comparison. They will look at dosage differences and track changes in severity. However, according to Todd and Ball, officials are adamant to get this medication out as soon as possible.
"There are hundreds of children in Alabama who have seizures that I thought could benefit from (CBD oil)," Todd said. "The research I did online was overwhelmingly in support of the usage of (CBD oil). I have always sponsored medical marijuana bills, so this fit within my priority."
Dustin knows he may never get to hear his daughter speak, but said he wants to give her the best life he can.
"It's not guaranteed," Dustin said. "I hope it does work. I just want the opportunity and option to try it when people in other states are doing it."
Today, he said he is amazed at how she has already touched lives.
"First time I walked in Montgomery, I was laughed at," Dustin said. "I had to keep the faith knowing I was fighting for the kids, for my daughter."
Gov. Bently signed Carly's Law into law April 1, and it will into effect June 1.
"The reality is we are not likely to get a lot of things passed around medical marijuana because of the monitoring," Todd said. "Other states like Colorado, obviously they are setting the pace for the rest of the country. I think within the next 10 years we are going to have a completely different legal view of marijuana. It's already starting."
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