A smiling but serious Dustin Chandler stood on Tuesday night before a group of families with seizure-stricken children during Carly’s Law Night to deliver a message laced with determination, gratitude and hope.
Chandler, 37, is the father of two young children he described as “typical,” a 4-year-old healthy and active son, Colton, and a 3-year-old daughter, Carly.
She is perhaps one of the most well-known toddlers in Alabama after the state Legislature unanimously passed a bill named in her honor toward the end of this spring’s general session.
But Carly Chandler, who has a rare genetic disorder known as CDKL5 and takes five medications to control her rampant seizures, could be characterized as atypical after spurring a state law allowing the University of Alabama-Birmingham to conduct a cannabidiol research study.
Proponents of CBD oil believe the marijuana-derivative has been shown to lessen or alleviate seizures, particularly in children.
A father’s love
Chandler and state Rep. Mike Ball, R-Huntsville, who sponsored the bill in the House, spent more than an hour answering questions from families and sharing the story behind the law during the gathering at 306 Barbecue.
Chandler, who has done everything from visit the governor and skydive to speaking engagements and raising money, said Carly’s Law happened for one reason, referring to children who have seizures but their families could not obtain CBD oil without moving to a state such as Colorado, where parents have legal access to the oil.
“The only reason I got in this is to help children like Caden (Jackson), Charlotte (Dalton), Chesney (Forsyth) and my daughter, Carly,” he said. “I never did the why me? I looked in her eyes and decided to give her the best quality of life I could. I’m not scared of anything but when your child is suffering, that is a helpless feeling.
“There are hundreds, thousands of families in Alabama that suffers in our state that we can help through Carly’s Law.”
Chandler credited legislators for working together to support a law that eventually will aid both children and adults with debilitating seizures.
“I found hope in Montgomery ... this went from a small, little-bitty bill to a full-blown research bill, and I give all the credit to the little kids and their families (that went to Montgomery),” Chandler said during his speech. “We’re a silent community for some reason but tell your story.”