Namesake of Carly's Law receives first dose of 'hope in a bottle'

(Video above: Carly Chandler takes some of her first unassisted steps.)
MONTGOMERY, Ala. — Last year Carly Chandler did the improbable, she captured the hearts of the Alabama legislature, compelling them to come together across party lines to help a group of Alabamians in need.

Carly is a 4-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. But it still wasn’t legal in Alabama.

“Carly’s Law” changed that last year, allowing the University of Alabama at Birmingham to develop a trial CBD treatment program for Alabamians who suffer from certain neurological disorders that cause daily seizures. Today, Carly took her first dose of that medicine.

The family posted a video of Carly taking some of her first unassisted steps with the aid of a walker, sharing the next part of their journey on social media.

“I see Carly’s strength everyday just by looking into her eyes, but when I see her take a step or two the meaning of strength goes to a higher level,” said Carly’s father Dustin Chandler in a Facebook post. “Carly is able to take up to 6 assisted steps in a ‘walker’ and that is nothing short of a miracle to me. Carly has been taking (physical therapy) since she was six months old and for the last two years, Daphne Wallace has been working with her. Without people like Daphne and other therapists Carly would never reach her God-given abilities. On the same token, it’s our duty as parents to make sure our children have every opportunity to live up to their potential, regardless of their capabilities. Carly has a long, long way to go, but with her strength and God’s hand, miracles will happen. I can assure you Carly is going to live her miracle, one step at a time. Never give up, take nothing for granted. God Strong.”

Mr. Chandler also posted a picture of Carly’s first vial of the medication on Twitter, calling it a bottle of hope.

Carlys first bottle of #hope @mattmurphyshow @myfoxal @yhn pic.twitter.com/ni9sYEElmV

— Dustin Chandler (@Know_Five) April 29, 2015

David Standaert, M.D., chair of the Department of Neurology said last year that UAB maintains a leading role in safeguarding the public health of the residents of Alabama through a special responsibility to provide access to cutting edge treatments and therapies that are not available elsewhere, and that UAB will continue to work in partnership with other neurologists across the state to provide the best possible medical care for all Alabamians.

“There is growing evidence from a number of scientific studies that cannabidiol is an effective treatment to control epilepsy and other neurological disorders that produce serious, debilitating, or life-threatening seizures,” Standaert said. “In some cases, seizures can be controlled with other medications, and some patients are candidates for curative surgery, but there are still cases that are difficult to control by any existing therapy. UAB will undertake research into the mechanisms underlying cannabidiol to learn more about its function and effect on seizures. This research will be invaluable in the search for ways to prevent seizures, or minimize their effects.”

Mr. Chandler said that the family is still waiting on test results, but has heard three other Alabama families talk about the successes they’ve already seen from the medication.