MEMPHIS, Tenn. (FOX13) – –Chloe, 3, has had more than 75,000 seizures in her life.
Because of the endless seizures, the only physical response her parents Shea Grauer and Elizabeth Peden get is when they hold her hand; they rarely see her smile.
“When we can kiss her or do anything and were able to tell that it’s a comforting measure it’s like ten Christmases,” said Peden.
Chloe was diagnosed with a rare neurological condition when she was six-days-old; she has 100 seizures a day. When she was a year-and-a-half old, doctors thought she’d die.
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“For two weeks we actually thought they were right,” said Grauer, “Then the third week she decided she was not going anywhere. And that’s what we said: if she’s not giving up then we won’t ever give up.”
Her doctors at Le Bonheur Children’s Hospital have done every surgery and tried more than 20 medications to help. Chloe takes five medications three times a day to keep her from day-long seizures. One medication her parents had to sign a waiver for because it could cause blindness.
Chloe’s parents’ last hope at allowing their daughter to grow and develop into a healthy girl: marijuana.
They learned the University of Colorado is studying a new drug using cannabidiol – a low-THC form of cannabis oil — for seizure patients.
“They’re doing things like sitting up, holding their head up, smiling; these things would be life-changing for us,” said Peden, “It’s an absolutely non-psychotropic form …it’s closer to hemp than it is to actual marijuana.”
Grauer added, “This will help any child and does not have the side effects like all these other drugs have.”
In January, Chloe’s grandmother, Gail Grauer, headed to Nashville to convince state legislators to pass legislation allowing studies of cannabidiol oil in Tennessee similar to the University of Colorado.
“When you use the term medical marijuana and in the same sentence you’ve got young children they shut down,” said Gail.
It passed. Tennessee lawmakers signed legislation allowing for clinical research into cannabidiol.
“Vanderbilt was overseeing the project,” said Shea, “Tennessee Tech was going to grow that strain of marijuana and then they were going to pass it out to all the kids here in Tennessee and Tennessee was going to try it.”
But federal regulations put it to a halt. Now Chloe’s grandmother is appealing to the federal government to pass a bill co-sponsored by Congressman Steve Cohen. It allows medical waivers to ship the cannabis oil over state lines.
“It’s a very complex issue. I had the same concerns when I started in this, so I understand that. I don’t judge for that,” said Gail, “But to help people understand and educate that’s the only way the bill is going to be passed.”
It leaves Chloe’s parents so close, yet so far from seeing their daughter smile.
“You want to do anything, you would do anything, you would literally do anything to save the life of your child,” said Peden, “And that’s kind of where we are right now. The waiting is the hardest part.
Shea added, “One day we will be able to try it and we will be able to get those smiles and those little laughs that a lot of people to take for granted.”
Gail along with Cohen have written letters to the Tennessee Attorney General Herbert Slatery and Governor Bill Haslam requesting waivers for the cannabidiol oil to be shipped across state lines to Tennessee without fear of prosecution or Child Protective Services involvement until the cannibidiol tests begin in Tennessee. She has not heard back about this.
Chloe’s grandmother also contacted District Attorney General Amy Weirich for advice on their request for a waiver; she has not heard back.
The Federal Bill HR5226, also known as “Charlotte’s Web Medical Hemp Act 2014,” to amend the Controlled Substances Act to exclude therapeutic hemp and cannabidiol from the definition of “marijuana” and prosecution now has “32 bi-partisan co-sponsors,” according to Gail.
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