Waylon’s story: New law, new hope

Forget about your views on the topic of medical marijuana. This story is not about that issue. This story is about 10-year-old Waylon Cordle and a mother who would walk through fire to get help for a child who has scores of seizures every month due to a condition called intractable epilepsy. Intractable epilepsy is a seizure disorder in which a patient’s seizures fail to come under control with treatment. These seizures are sometimes also called “uncontrolled” or “refractory.”

“He suffers from numerous seizures every day,” Tara Cordle told The Daily Times. “His whole body convulses. He requires oxygen sometimes when he has them. He stops breathing. His lips turns blue. His face turns gray.”

Cordle said her son’s journey through the odyssey that is intractable epilepsy, began when he was seven. The first time it happened, Waylon was in Nationwide Children’s Hospital in Columbus. His brain was non-stop seizing and he was placed in a medically-induced coma for 26 days – the first time.

When he came out of the coma, he was a seven-year-old infant and required rehab to learn to walk, talk and eat again. It was not by any means, the last time. In fact the last time was in October, when he was placed in a coma for 32 days to quiet his brain down.

Medical care? You bet.

“He swallows 47 pills a day and still suffers from seizures,” Cordle said. “That’s why I advocate for medical marijuana in Ohio.”

Has it been tried on him?

“He’s in an Epidiolex study trial at Nationwide Children’s Hospital using a derivative of cannabis. They take pieces out of it,” Cordle said.

Cordle’s life has been one of advocacy for her son. She has been called everything from “pushy” to “relentless.” She doesn’t care. To say she has spent several days in the state capitol, testifying and advocating, is an understatement.

“Most of the people at the statehouse, most of the senators and state reps, all know who we are because we have literally beat their doors down for a couple of years,” Cordle said. “There’s lots of naysayers that are still out there. But we actually did it and that’s all that matters.”

At one point she took canisters containing 17,484 beads, representing the number of pills her child takes each year.

On Wednesday, Cordle was rejoicing over the fact that Ohio Governor John Kasich signed the medical marijuana bill, HB 523, into law, making Ohio the 25th state to do so.

“This is a joyous day for the thousands of Ohioans who will finally be able to safely access much-needed medicine,” Ohioans for Medical Marijuana spokesman Aaron Marshall said. “As we continue this movement to bring medical marijuana to all Buckeyes who need it, we will remember today as a huge step forward.”

Will the signing of the bill into law clear the path for her to get help for her child?

“Absolutely,” Cordle said. “It still costs us and there’s still people who have to learn what to do and how to do it and get it up and running. Once it becomes law, as long as I have a doctor recommendation, I’ll be able to go to a legal state and bring home medicine without worrying about being in trouble in Ohio by getting a life-changing, life-saving medication that will help him.”

In 2015 , the Benton family — Heather, Adam and 3-year-old Addyson — picked up stakes and moved from Ohio to Colorado in order to get medication from what is a derivative of cannabis. Suffering from over 1,000 seizures per day, Addyson was diagnosed with myoclonic epilepsy. They had tried several medications – none worked.

“They’re friends of mine,” Cordle said. “I’ve been to Colorado and spent time with them. They literally picked up their lives – after they had built a brand new house and moved to save their daughter.”

That move is part of what inspired Tara.

“We’ve been fighting ever since and yesterday (Wednesday) was a game changer,” Cordle said. “For years, we have just fought and argued and called and emailed and knocked on the statehouse doors until they finally started listening.”

Some pro-medical marijuana people are still skeptical about the law because they say it doesn’t go far enough. There are those who are advocating home-growing.

“We tried to push for that because it would be cheaper,” Cordle said. “I’m not going to walk down the street and smoke weed like people think. This is just going to be a learning process for Ohio and we hope we can do the right thing from the get-go, but we actually did it – that’s all that matters.”

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Waylon Cordle
http://portsmouth-dailytimes.aimmedianetwork.com/wp-content/uploads/sites/28/2016/06/web1_Waylon1-1.jpgWaylon Cordle



By Frank Lewis

[email protected]

Reach Frank Lewis at 740-353-3101, ext. 1928, or on Twitter @franklewis.

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