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Family Says Illegal Cannabis Could be Cure for Daughter

NORTHWEST Ark. -- A local family is hoping to shed some light on the possible benefits of medical cannabis, all while fighting to keep their daughter alive.
"What we're trying to do here is just give kids hope. Naomi obviously didn't ask for this condition."
NORTHWEST Ark. -- A local family is hoping to shed some light on the possible benefits of medical cannabis, all while fighting to keep their daughter alive.

"Naomi was born a normal, happy, healthy baby girl."

Naomi completed the Eckels family, but a diagnosis at just four weeks old changed everything.

"She has a rare genetic condition called CDKL5. It's a deletion on her X chromosome that causes seizures, severe developmental delay. Usually after the second seizure med, if that doesn't work, then the likelihood goes down to 10-percent of you finding a seizure medication that will help your child. A lot of the side effects of anti-epileptic drugs, seizure medications, is death," said Sara Eckels.

Their daughter can have hundreds of seizures a day and they have already cycled through 20 failed medications over the last two years. Watching Naomi lose her ability to eat and sit up, Sara and Doug are willing to try anything.

"If somebody told us that there were yellow dandelions out there in the yard and they would cure our daughter's seizures or stop her seizures, you bet we'd try it. In this case, it just happens to be a plant that's illegal," said Doug Eckels.

"Right now it's an 80-percent success rate as far as seizure reduction," said Sara.

The couple took a trip to Colorado, one of 20 states where medical cannabis is currently legal. Cannabadiol is the chemical property in marijuana that research suggests could benefit those suffering from seizures.

"They have labs. Every dose, every vial is scientifically tested. It would be made into an oil, similar to honey. In Naomi's situation because she's not able to swallow things, she would actually take it through her G-tube. The common misconception is that marijuana or pot is going to get you high... The plant that they've actually kind of hibernized for children, has less than 1-percent THC so it's 100-percent nonpsychoactive, so children are not going to get high," said Doug.

"There still needs to be a lot of research done about it and so we're not saying that that's the answer, that it's going to cure her seizures, but we at least want that to be an option for us here in Arkansas... Even if she was able to smile more and look at us, it'd be worth it to us... Just a better quality of life is what we want for her because right now her quality of life is diminishing," said Sara.

But living in Arkansas, the Eckels cannot legally try cannabis for their daughter.

"If we were to administrate that in the state of Arkansas currently, we could go to prison. It would require us relocating legally to do that and move to Colorado and possibly separate our family with jobs, work," said Doug.

"You hear people say, you should give up on her or you should just enjoy her while you have her. We're just not going to give up. I don't see how anyone could do that to their child, just give up on them and not try everything they possibly could," said Sara.

Sara, Doug and big brother Noah will keep fighting for Naomi.

"He still loves her so much and always takes good care of her, always kisses her, reads her books. We always say we pray that she will stop having seizures but we don't know."

The Eckels family is relying on faith, that one day medical marijuana will be legal in Arkansas.

"What we're trying to do here is just give kids hope. Naomi obviously didn't ask for this condition," said Doug.

"It's not something that we ever would wish on anyone but we want to get the word out there so that it can help other people who have children with severe epilepsy," said Sara.

The U.S. National Institutes of Health lists 46 clinical trials that have been approved to study the different medical impacts of cannabidiol and some states are shifting their focus from legalizing medical marijuana to just legalizing the oil. In the meantime, the Eckels family is not the only one battling this issue.

CLICK HERE to hear from another Northwest Arkansas family with two children suffering from seizures. 

(courtesy KNWA)
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