This is an interview with Dustin Chandler. He is father of Carly, who has a rare epileptic condition called CDKL5. Dustin is a board member of The International Foundation for CDKL5 Research. He also actively advocates for CBD oil to become a legal option for Alabama's epileptic children.
Suzanne
Can you tell
us a bit about yourself? And can you talk about what life is like for your epileptic
daughter?
I was born and raised in Alabama. I am a Police Officer in a
town just south of Birmingham and I love my job. I have a typical four year old
son who is as “boy” as they come. I am also the proud father of Carly who will
be 3 in February. Carly was diagnosed with a rare neurological disorder called
CDKL5 in 2012. Since her diagnosis we have been trying to bring ultimate
awareness to the disorder since only 600-700 worldwide have been diagnosed.
Carly has anywhere from 2-5 seizures per day and currently they are complex
partials. Unfortunately, her mother Amy and I live everyday worrying about
when Carly's next seizure might occur. Once Carly has a seizure we have to alter
our day to accommodate the lethargy that follows. Just recently our four year
old son started to “roll play” like he is having a seizure like his “sissy”. It
breaks my heart to know my son must witness these episodes of his younger
sister and then “act” them out.
When Carly was diagnosed I looked into her gazing eyes and made
the promise that I would do everything in my power to give her the best life
possible. That is a promise I will keep as long as I am alive.
The fear of SUDEP (Sudden Unexpected Death in Epilepsy) also is in our minds.
Suzanne:
How does your support for CBD oil, technically a form of medical marijuana, reconcile with
your vocation as a police officer? Did you always support this cause or was it
inspired by the every day reality in your home?
Dustin:
As a Police Officer I uphold all the laws that are on the books
and that most definitely includes the drugs laws of Alabama. That is something
I was sworn to do and take very seriously and that stance will not change. It
has only been recently that I have started to look into the positive effects
that CBD’s could potentially have on Carly. Since there are no psychoactive
properties, it's non-addictive and has no side effects, I began to be a vocal
proponent of CBDs. You can say I was inspired by the promise that I made to
Carly about giving her the best quality of life. She is my inspiration and
helping other suffering children of Alabama is as well.
I am not asking anyone to break the law nor am I wanting to
break the law. I want there to be proper legislation set forth in Alabama to
allow parents to explore treatment options other than traditional methods that
most of us have tried and failed.
Suzanne:
How do you think CBD oil might help your daughter?
CBD oil has the potential to change the course of not only
Carly’s life but also that of my family. It would hopefully be affective in
controlling seizures and free us from the nightmare of wondering when the next
one will strike. Since there is not much
known about her disorder, CDKL5, there could possibly be more extraordinary
benefits we do not know about yet.
Suzanne
What do you want others to know about CBD oil for epilepsy?
Dustin:
I want everyone to know that CBD-oil is not going to get a child
“stoned”. CBD oil is extracted from the marijuana plant and used as a medicine.
I want people to open their minds and think about the thousands of children
like Carly that suffer everyday and the help CBD-oil could possibly provide.
-------------------------------
