Charlotte families uprooting lives to get legal marijuana for sick kids

Published: Mar. 12, 2014 at 3:25 AM EDT
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COLORADO SPRINGS, CO (WBTV) - 3-year-old Luka Cardona has been having seizures since five weeks old.

"7, 10, 15... sometimes up to 20 a day," says his mother, Maria Cardona.  "But since moving from our home in southwest Charlotte to this apartment in Colorado and getting him on this medicine, we're down to 1-to-2 a day."

Native Charlottean Liz Gorman tells a similar story.  When she uprooted herself and her 7-year-old daughter Maddie to Colorado in mid-December, Maddie was having 100 seizures a day.

"She was going rapidly downhill when we moved," says Liz from the townhome she's leasing in Colorado Springs.  "Things were getting worse by the week.  We were at about 100 seizures a day.  So to now see improvement  -- we can sometimes be at 10 a day -- and improvement in cognition, it's pretty impressive."

Both Maria and Liz are two moms of roughly 150-200 nationwide who have their children on a new-age medicine called "Charlotte's Web".  Early success stories of families who have tried everything else and seen nothing work on their children's epilepsy, say it could be a miracle drug.  It's illegal in the Carolinas because it's made from marijuana.

Both Maria and Liz moved with their children.  Both had to leave their husbands for their jobs.

"It comes from cannabis," says Liz.  "But children don't smoke it.  It's a liquid medicine.  We give it to our children like other parents give Tylenol.  And most importantly, it only has trace amounts of THC.  You can't get 'high' from taking Charlotte's Web."

This is true.  This is a specific strain of medical marijuana people around the country are moving to find in Colorado.  It doesn't get anyone high.

How?  Because of how it's processed.  Marijuana has two main things in its make-up:  THC and CBD.  THC (stands for Tetrahydrocannabinol) is the stuff that makes you get that floating, euphoric, "stoned" feeling.  CBD (stands for cannabidiol) is a non-psychoactive component.  Research increasingly shows CBD possesses a wide-range of therapeutic benefits.

A group of brothers in Colorado started a company, "Realm of Caring Foundation", where through trial and error they removed the THC and focused on creating a strain really high in CBD. 

The first child it worked on was named Charlotte Figi, who lives in Colorado.  That's why the brothers named it "Charlotte's Web".  Dr. Sanjay Gupta featured Charlotte in a CNN documentary he did in late 2013.

We visited "Realm of Caring" headquarters, hidden in the Rocky Mountains.  There are no signs.  No attention being drawn to what's happening on its land.  The main building itself is a small, non-descript cabin found at the top of a hilly dirt road with "No Trespassing" posters.  There are two greenhouses 50 yards away.  Another two greenhouses are in production.

"We just have so much demand," says Jordan Stanley, one of the brothers in charge.  "We need more space to keep growing these plants."

Jordan says approximately 150 kids are currently on "Charlotte's Web", but right now they're getting up to 500 calls a week from parents and interested parties across America.  It's growing fast.

"We won't start a child on the medicine unless they're approved as having other options not work," said Jordan, "AND unless we have enough medicine for them to last their entire lifetime.  We don't want to start a child, have this work, then have them depend on it and us run out of supply.  That's why we need to build.  We need to have more so we can start more kids on what seems to be working."

WEB EXTRA: "Realm of Caring" waiting list

"Realm of Caring" also has workers inside its cabin trimming plants to make sure dried, cured buds are cut off.  It then sells those to businesses in Colorado which can now legally sell recreational marijuana.

"We put the money we make from selling the stuff recreationally smoked right back into what we're doing here," said Jordan, as he pointed out four workers sitting with clippers in the "manicure room".  "These people here are making it presentable to hit the shelves."

If no one can get high on "Charlotte's Web", then why is it illegal in most states?

"Great question," said Jordan.  "I think it's about lack of education and people not realizing the difference."

"I think it's about stigma," says Liz, when asked the same thing.   "Having tried it now and having had to move across country to get it, I honestly feel this is ridiculous we can't have it everywhere.  Aside from the fact it comes from a cannabis plant, there's nothing about it really that's dangerous.  Parents don't need to be afraid that their children could get ahold of it and use it in an incorrect way."

There are no official studies on Charlotte's Web.  No federal agency says this works.  But Jordan assures "Charlotte's Web" has the THC removed.  The proof, he says, is in the kids taking it.  Both Liz and Maria say they see no side effects when they give the low dosage they're trying to Maddie and Luka, respectively. 

"I think it's saving my child's life," says Maria.  "Some days are better than others, but we have tried 13 different medicines already so why not medical marijuana?  Why not?"

There is a Facebook page specific to North Carolina parents trying to get information and educate the public on the difference in ALL medical marijuana and medical marijuana simply high in CBD.  It's under NC 4 Hope.


There haven't been many critics of this particular strain in the past.  There are plenty of critics of medical marijuana in general, but not of this particular strain seemingly helping kids and getting no one high.

"That's why it's mostly about education," says Liz.  "If people knew this was different and legalizing strains high in CBD wasn't going to leave you with potential for abuse, I bet we could get this through and I could move home."

Liz is contacting state legislators.  She was before moving, and is still contacting them from Colorado via email.

"I've written every single North Carolina state senator and met with a few," she said.  "Some have been receptive to it.  My hope is they are able to see the progress children on it are making and realize it's worth taking a step.  I want them to see it's just a medicine for kids who literally don't have a quality of life, and this is improving it."

She then adds with a smile, "I'm not giving up.  It's too important.  I really want them to legalize it for Maddie, but for all the other kids out there suffering, too.  Hopefully they'll see that we shouldn't have to move for this."

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