Hope for Carly


Dustin Chandler fights to legalize medicinal marijuana in the state of Alabama to give his daughter another chance.

Written by Lindsey Lowe      

Photos By Arik Sokol

 

Carly Chandler is 3 years old, but she doesn’t talk. In fact, her parents may never hear her say, “Mama” or “Daddy.” She doesn’t walk; they will never call out, “Carly, no running!” when they hear her feet take off on their hardwood floors. Carly doesn’t do a lot of the things typical 3-year-olds do, her dad, Dustin Chandler, tells me over coffee one day. But he has that proud-parent sheen in his eyes when he talks about his little daughter. “She’s teaching lessons to a lot of people,” he says. “And she can’t even talk.”

When Carly was 8 weeks old, she began having unexplainable seizures. The seizures never went away, and when she was a year old, she was diagnosed with CDKL5, a rare X-linked genetic neurological disorder (there are only 600–700 people in the world diagnosed with CDKL5, which was discovered in 2004.) Carly has many neurological disabilities, but Chandler explains that it’s hard to pursue therapy for them because of the seizures. “The seizures,” he says, shaking his head. “We still have these seizures.” No seizure medication the Chandlers have tried has worked for Carly, who has three to five seizures a day (at the beginning, she had some 10–15 a day.) “It’s hard to describe the helpless feeling of watching your kid have a seizure,” he says. “The two worse things that can happen during a seizure are brain damage or death. Any time Carly has a seizure, she could have brain damage or die.”

One day, about a year ago, Chandler was perusing the Internet, hoping to find something that he had missed before. He came across a story on CNN about Charlotte Figi, a little girl diagnosed with Dravet syndrome, a rare form of epilepsy in which the seizures do not respond to medication. As Chandler read the Figis’ story, he noted the similarities between theirs and his own; though the two girls had different diseases, they both experienced countless intense seizures. The Figis’ story was on CNN because they had tried something unprecedented in their search for a cure for Charlotte: cannabidiol (CBD oil). The medicine is derived from the cannabis plant.

It was R4, a type of marijuana low in tetrahydrocannabinol (THC), the main psychoactive constituent in marijuana, and high in cannabichromene (CBC), which has medicinal properties. (In fact, this strain was initially called “Hippie’s Disappointment” because of its lack of effect psychologically.) That is to say that the oil doesn’t get you high, but it does act medicinally. Chandler read how Charlotte had gone from having 300 grand mal seizures a week to having three or four a month; she had regained many of the functions epilepsy had taken from her. CBD oil sounded like something that might help Carly, but Chandler wasn’t sure where to start. The Figis lived in Colorado, where this treatment is legal, and Chandler, a police officer in Pelham, knew that because she lived in Alabama, it wasn’t an option for Carly—at least it wasn’t an option yet. “You’re talking about a very, very red state where you can hardly get anything,” Chandler says. “But this isn’t a political issue. If we can help people, we need to help people.”

Thus began Chandler’s crusade to legalize CBD oil in the state of Alabama. In September of 2013, he met with Gov. Robert Bentley in Montgomery to explain his cause. “[I told him], ‘If you ever see a medical marijuana bill come across your desk, don’t veto it.’ Word got out that I went to the governor, and he made the comment [to the media], ‘I’m against all forms of marijuana.’ That lit the fire even more in my belly. I thought, ‘I respect his opinion, but we have children here in Alabama who are suffering, and just because that comes from the cannabis plant doesn’t mean we shouldn’t be able to try it.’ There’s no other helpless feeling than seeing your kid having a seizure and you can’t do anything about it, and there’s a possible solution that may or may not work, but you can’t try it because the state won’t let you do it.” Chandler’s next step was to create an online petition to garner public support, which got nearly 4,000 signatures. After that, he sat down with Senator Cam Ward. “He said, ‘Hey listen, I’d like to see that kind of bill get debated, but it’s got a long way to go. Don’t get your feelings hurt if it doesn’t happen the first time.’” Ward pointed him to Rep. Patricia Todd, a champion of progressive movements in Alabama.

Chandler met with Todd and they spent two hours talking through the logistics of getting something like this passed in Alabama. “She understood that this is really not part of a more broad medical marijuana bill,” he explains. “This is a very narrow bill. It’s going to help out a lot of people, but it’s not a comprehensive bill.” Soon after his meeting with Todd, Chandler heard that Rep. Mike Ball was interested in the cause, and he gave him a call. After a number of conversations on the phone, Chandler met with Ball in Montgomery in early February of 2014, and together, they wrote the first draft of the bill known as Carly’s Law. The bill stated that it wasn’t illegal to possess or use CBD oil in the state of Alabama.

All along, Chandler worked to gather public support for the bill. He believed that if he could bring awareness to people—if he could share Carly’s story and put a face on the issue—he would gain their support. In an effort to do just that, Chandler held a rally on March 1; it proved to be a turning point. “We had peaks and valleys. We had weeks where we thought it was gone,” he says. “Us sitting behind the keyboard is great, but we needed to show the politicians who we were. When we started showing faces of the children who would be affected by this, that’s really when it started to turn in our favor.”

With Chandler working to educate the public and Ball working within the walls of Montgomery, passing Carly’s Law began to seem like a possibility. Chandler believes it was humanizing the cause—at one point, he showed a video of one of Carly’s seizures—that made the difference. “You know, my daughter can’t talk,” he says. “But she has the loudest voice.”

On April 1, 2014, Bentley signed Senate Bill 174, or Carly’s Law; it passed unanimously in both houses of the Alabama Legislature and went into effect on June 1, 2014. The bill allows the University of Alabama Department of Neurology to orchestrate a study that examines the effectiveness of cannabis oil on patients with severe neurological disorders, like CDKL5 and epilepsy.

Chandler says that this has given his family—and others like his—something they were running out of. “It just gives us hope,” he says. “Your nightmares start when you fall asleep, but our nightmares begin when we wake up…so it just gives hope for Carly. Even if it doesn’t work for Carly, but it works for someone else’s child, it was worth the fight. I hope Carly’s Law is inspiration to other families to stand up and share their stories. And to think my daughter started giving them hope again—that’s very humbling. It means a lot to think God put [Carly] here for a reason.

“We never said, ‘Why?’ It’s a heartbreaking thing, but we embraced it, and we said, ‘She’s going to touch lives, and it’s our responsibility to do that,’” he says. “To get to a point where there’s one more chance—it makes you feel God. Her brain has a chance to learn new connections.”

Carly and other children who have disorders like hers could be able to receive the CBD oil as part of the UAB study as early as the fall of 2014. Chandler is hopeful that it will be the answer he’s been searching for; if it’s not, he says, he’ll just keep looking. “That’s one thing I told her when she was first diagnosed,” he says. “I told her I was going to give her the best quality of life that I could give her.”

One Response to “Hope for Carly”

  1. Derrick Forbes says:

    This was an impressive read, so kudos to the author Lindsey Lowe. This article was well written and an inspiring. I found it an absolute pleasure to read. It is absolutely remarkable the politicians in Alabama set aside their personal beliefs concerning medical marijuana and passed such a controversial law. I commend each and every one of them for showing America that Alabama is progressive and independent. With bold decisions such as this being made in Montgomery, Alabama is truly taking an essential leadership role in our country, in which other states will follow. Dustin and Amy have courageously represented their cause for Carly, as well as, all others who face such challenges. Pelham’s Mayor, Gary Waters, is certainly applauded for supporting his Police Officer, Dustin, even though it was such a politically controversial commitment. Outstanding work Alabama!

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