By Lee Hedgepeth
Alabama Political Reporter
In late November of last year, Pelham Police Officer Dustin Chandler and his family paid a visit to Governor Bentley. The purpose of their visit was to raise awareness about the concerns and needs of children (like their two year old daughter Carly), who suffer from a rare genetic disorder referred to as CDKL5. The disorder causes mobility and functioning problems and may also cause severe seizures.
During their visit, Chandler brought up a variety of issues including promoting early intervention in children and continuing broad funding support for public school special needs education.
By far, though, the most controversial issue the Inverness resident brought up with the Republican Governor, was the utilizing of marijuana derivatives as a treatment for CDKL5.
As has been widely touted by Chandler, CNN reported on a Colorado child whose seizures decreased from around 1,000 a month to just a few with the ingestion of a marijuana-based oil through food twice daily.
His whole argument isn’t one of medical certainty, though, but parental choice and child health.
“It would not necessarily help Carly’s disorder and make it go away. It’s just the quality of life. It’s a treatment for the epilepsy and giving them a better quality of life. So many parents are struggling to push to at least give us the chance to try it, because there is no medicine out there that works on these seizures. She’s tried the heaviest of the heavy and they don’t work. Now there’s studies coming out saying this does help.”
At the time of the meeting, Governor Bentley released a statement which seemed hesitant of the new drug treatment:
“Governor Bentley listened to the concerns of Mr. Chandler and his family. The Governor is supportive of special needs education and early intervention programs to help those with disabilities or developmental delays. Governor Bentley is opposed to legalizing marijuana.”
The Chandler family has received support from both sides of the aisle in the State Legislature. Republican Representative Mike Ball of Madison and Democratic Representative Patricia Todd of Birmingham are sponsoring legislation that would legalize the use of the cannabis derivatives for such medicinal purposes.
“You can’t get high on it and it has no street value,” Representative Ball has stated, making clear his difference in opinion on the topic that Governor Bentley.
In addition, according to Representative Todd, the benefits are obvious:
“This is a child with a severe disability that has very violent seizures every day and research demonstrates this oil is extremely effective to eliminating or decreasing the seizures that the kids have.”
Officer Chandler, who has been lobbying lawmakers Statewide before the upcoming legislative session, has made clear this is a fight he is will win.
“We’re really drafting legislation to address the issue of if we can help as many kids as we can help now and get that passed, that’s the common sense of getting it done. If we can help people now and help children now with certain disorders, that’s what we need to do.”
In addition to his lobbying, Chandler began a petition on change.org directly asking Robert Bentley to call for legalization legislation. As of now, it has just under four thousand signatures.
“There are thousands of children with epileptic disorders, including 30% of those with Autism, in the State of Alabama that need to stop suffering. In Colorado, for example, there has been great success using Cannabidiol (CBD) for seizure control. Dr. Sanjay Gupta has documented these types of treatments and how they have had a positive effect on patients suffering from Epilepsy. The parents in Alabama need to have another option for their children other than that of pharmaceuticals that do not work. They need to be able to use these treatments without the fear of prosecution from the government and the government needs to allow us access to such treatments. As a father of a suffering child, I am asking you to please seek legislation to help Carly and thousands of children. This is not a request to legalize Marijuana. This is a request to show compassion. This is a request to show you care for the children in Alabama.”
The 2014 legislative session begins January 14th. The Governor has not commented again on the matter, and no cosponsor has (as of yet) emerged on the Senate side.
