Okla. family desperate for cure, turns to controversial treatment

An Oklahoma family was not sure where else to turn.

Their little girl was having 300 seizures a day.

She would often stop breathing, nearly dying dozens of times.

The cause of her seizures was a rare disorder for which there is no cure.

Her family has now found hope through a drug considered illegal in our state.

They’re sharing their story in hopes of helping others understand.

Six year old Zoey is learning what it’s like to live life to the fullest.

The kindergartner suffers from Dravet’s Syndrome, a seizure disorder which struck when she was just three months old.

Mallory Johnson, Zoey’s mom, said, “She just locked and went into full tonic, clinic seizure.”

Those seizures seemingly never stopped.

They went on all day, every day for years.

“Eye flutters, jerks, drops,” Mallory said. “Medicine after medicine.”

At one time, Zoey was on 24 medications a day. One of those medications was only approved for veterinary use.

Still, her family was spending days in the hospital nearly losing her time and time again.

Mallory said, “To know your child could die at any time and you would do anything, it doesn’t matter.”

It was last fall they reached the point where there were no more medications to try.

Zoey was losing her battle.

The family’s last hope was a drug they’d heard of on a CNN documentary.

Marty Piel, Zoey’s Papa, said, “She was crashing. It looked like we were going to the emergency room again. They gave her a few drops, it seemed like, and the seizures stopped within 15 minutes.”

Mallory said, “It was surreal. I’ve never felt closer to God.”

The drug was cannabis oil, better known as marijuana.

Mallory said, “It was our last option.”

Marty said, “It’s an oil. They take it orally.”

Zoey has never smoked marijuana and her family says she never will.

Her dose is less than teaspoon full of CBD oil, yet the results are incredible.

Marty said, “In the first eight days she said 20 new words.”

Mallory said, “She spelled her name. She couldn’t even say her name, but she spelled it, perfect.”

The improvements have not stopped.

Marty said, “Eight months ago, nine months ago she could hardly stand up.”

Mallory said, “Now, now she runs. And she’s full of life and personality.”

It’s a drug which is technically illegal in our state; However, the form Zoey takes has none of the psychoactive ingredient which is in pot.

Mallory said, “She’s never been high, never.”

Mark Woodward, with the Oklahoma Bureau of Narcotics, said, “If it has no THC in it then it’s not a violation of the law.”

Woodward says his agency is not against the use of the CBD oil. They’re actually hopeful testing by the FDA will be done on the oil so children like Zoey can get help without legalizing pot in our state.

Woodward said, “It takes the whole smoking pot argument away. They’re benefiting from an oil you don’t get high from.”

Mallory said, “I think people need to just be open. This is a plant God put here.”

Zoey’s family admits not everyone agrees with their course of action.

Mallory said, “I’ve lost jobs and friends.”

Though the results speak for themselves, Zoey now attends kindergarten. She can jump on a trampoline and she’s learning to write.

Mallory said, “We’ve never seen a change like this with any other medicine and we’ve gone through them all.”

Marty said, “There really isn’t a downside.”

While she does still have seizures, it’s nowhere near the previous 300 a day.

Mallory said, “She’s probably always going to have seizures. I don’t think it’s some miracle drug. But, she has a chance now to go to school.”

She has chance to learn.

Her family hopes it’s also a chance for her to someday live a life of her own.

“I don’t care if she’s the first lady, president or an astronaut,” said Marty. “But, if she could have a normal life and go to school with other children, maybe someday get married. We don’t have to have the sun and the moon, but maybe that would be the sun and the moon for us. “

Zoey’s family does have to go out of state to get the cannabis oil.

They agree with the bureau of narcotics that there is a fine line to legalizing the drug.

Mallory said, “I think it’s just like anything else, everything has to be regulated.”

However, they believe this option is safer than some of the medications Zoey is already prescribed.

Mallory said, “Some of the medicines she needs to come off of are said to have worse withdrawals than cocaine and heroin combined.”

They encourage anyone who sees or reads Zoey’s story to do their own research on the subject.

Zoey’s family does have a Facebook page for those who wish to follow her progress.

The page is called Zoey’s Zone For Hope.

There is also a benefit concert being held for Zoey in Stillwater on May 24, 2014, at Tumbleweeds. benefitconcert

It is an all ages event featuring numerous live musicians.