- Dara Lightlemoved to Colorado last October to seek treatment for her daughter, Madeleine, who has epilepsy.
- Madeleine Lightlenine-year-old being treated with medical cannabis for her seizures. She moved to Colorado last October with her mother.
Last year, Dara Lightle and her nine-year-old daughter, Madeleine, became “marijuana refugees” when they moved from Virginia to Colorado. At the time, Madeleine was suffering from hundreds of seizures a day. Her doctors in Virginia recommended brain surgery. Then Dara heard how cannabis oil had treated children suffering from similar conditions. The oil worked. But since the oil was considered an illegal drug in much of the country, they had to move to Colorado, where it is legal, to continue treatment. According to the Colorado Springs Gazette, at least 115 “marijuana refugee families” from 43 states have left jobs, homes and family so they could obtain the cannabis oil to treat a variety of ailments. We speak to Dara and Madeleine in Denver.
JUAN GONZÁLEZ: Today we look at marijuana refugees—people and families who have uprooted their lives and moved to Colorado with the hope of obtaining medical marijuana to treat various illnesses. Many are families with young children who suffer from epilepsy and relentless seizures. According to the Colorado Springs Gazette, at least 115 marijuana refugee families from 43 states have left jobs, homes and the rest of their family so they could obtain oil made from a special strain of cannabis that have repeatedly quelled the seizures in a handful of kids in Colorado Springs.
AMY GOODMAN: The Colorado Springs Gazette recently published a piece about nine-year-old Madeleine Lightle and her mother Dara, who moved from Virginia to Colorado. In a moment, Madeleine and her mother will join us, but first let’s turn to this video about their story produced by the Colorado Springs Gazette.
MADELEINE LIGHTLE: Hi. My name is Madeleine.
DARA LIGHTLE: When I think of a child who has seizures, I think of a very low-functioning child. So, to see my high-functioning child and imagine her losing function was very scary. There was hope that she wouldn’t have any more, that that would be it, she would just have one. And then she had another one about a month later. And then it’s like you go through all those emotions again. You don’t know what’s going to happen. And, you know, earlier that year, I’d been wondering: Why can’t she do math anymore? You know, I’m trying to teach her the same grade over and over again, and nothing is sticking.
So, that’s when they told us that she was a candidate for brain surgery. What we didn’t know is that what they wanted to do was take out the entire left side of her brain. And to look at your daughter and imagine half of her brain being taken out, it was probably the hardest point in my life. It could make her better, or it could not. It could take away seizures, or it could not. Still, again, it was our only hope. It was our only hope.
This is when I saw a video about medical cannabis and how it could help with seizures. And it was about two weeks after that, that it was like: I think we need to move to Colorado; I think I need to bring Madeleine to Colorado. And then, within the next week, it was like: We’re moving, and we’re not coming back. It’s been six months. She began reading, she began writing, she began doing math—and remembering.
Yeah? Two plus two is?
MADELEINE LIGHTLE: Four.
DARA LIGHTLE: You got them all right, Madeleine!
Some days I just feel like: What a blessing that we were given this opportunity! I don’t feel worthy, but I do believe my daughter is worthy to have a chance at life and to live, and I’m so grateful that this simple oil from a plant is giving her that.
AMY GOODMAN: That’s Dara Lightle in a video produced by the Colorado Springs Gazette. For more, we go to Denver, where we’re joined by Dara and her daughter Madeleine, or Maddy.
Thanks so much for driving in a couple hours from Colorado Springs to Denver for this conversation. Dara, why don’t you start off by talking about where Madeleine was born and when she had her first seizure?
DARA LIGHTLE: Well, Madeleine was born in 2004, and she actually was born prematurely and had a stroke in utero. And then, actually, we did not see any seizures until she was five years old. She had her first seizure when she—in 2010, in the summer of 2010. And we were actually not expecting it, even though she did have brain damage on the left side of her brain due to the stroke in utero. We thought, by that age, we would not see any seizures.
JUAN GONZÁLEZ: And once those initial seizures began, what kind of medications did you use at that point?
DARA LIGHTLE: We used pharmaceutical medications—Trileptal, I think, was one of the first, and Vimpat—started with, you know, low dosages, but she continued to have seizures. More were added on. Some were taken away because they were—had adverse effects, such as anger. We saw a lot of—she’s actually very—normally very calm and very sweet. We saw things in her like personality changes. And so they would take some away and add some more. And we would still continue to see issues, but we would have to deal with them because sometimes her seizures would stop for a time, and then her seizures would come back, and they would have to keep adding more medication on.
AMY GOODMAN: Maddy, thank you for coming in with your mother. It’s good to have you with us. Hi.
MADELEINE LIGHTLE: Hi.
DARA LIGHTLE: Say hi.
MADELEINE LIGHTLE: Hi.
AMY GOODMAN: Madeleine, Maddy, can you talk about how a seizure feels for you?
MADELEINE LIGHTLE: It feels, um, pretty not good, but I have—but I usually tell my mom that I’m having a seizure and that I have—that I have a good life with seizures and that this medication is helping me.
AMY GOODMAN: So, Dara, can you talk about what the—what that trajectory is from having gone through the seizures and then ultimately coming to Colorado, the drugs you used before and what you’re using now?
DARA LIGHTLE: Well, basically, last summer, the medications she was on, by the end of last summer, she was on three medications. Her emotions and—she was kind of like what I would call a zombie. She was a shell of a person. There were times where she couldn’t even find the bathroom in the house that she grew up in. And that’s how bad things were during that time. Whether that was from pharmaceuticals or seizures, we’re still unsure. I think that the pharmaceuticals actually exasperated her condition and made her worse. We decided—when we saw this video about medical marijuana and how it was helping children with seizures, we decided the best thing for Madeleine was that we needed to move out to Colorado. And my mother joined me out here in Colorado.
When we came out here and Madeleine started the medical cannabis, it was—as you heard in that video, it was—our only hope before was brain surgery, taking out the whole left side of her brain. And to look at my child and imagine taking out the left side of her brain is very difficult for any mother, for any parent to see that. So, when we heard that medical cannabis could help, at first it was scary, because you’re like, “Well, I don’t want my child getting stoned. I don’t want my child smoking pot.” But once we realized that it really was an oil that is given—you know, was given to her at first three times a day sublingually, in her mouth, and that it wouldn’t get her high or anything like that, we slowly started to realize that actually the pharmaceuticals were making her high and that the cannabis was helping her get better. And she was off of all pharma—we started the cannabis oil in October, and she was off of all pharmaceuticals by the end of December.
JUAN GONZÁLEZ: And could you talk about the change, the frequency of the seizures previously, before you started this treatment, and what life is now like for your daughter and your family?
DARA LIGHTLE: Yeah. She had three days of video monitoring and testing at Johns Hopkins Hospital in the summer. During that time, we were actually told—and we didn’t know this—that 80 percent of her sleep was seizure activity. She was having so many seizures that she could not learn. She could not add. The neurologist put two fingers up and said, “What’s one plus one?” And she said, “Three.” She couldn’t even add. And at this point she was eight years old. And she couldn’t read. She couldn’t do anything.
And so, basically, when she started the cannabis, it took some time. It was a little roller coaster. You know, there was periods of time where she would have more seizures, and there were periods of time where she was very cognitively clear, is the best way to show it. She was coming out of her shell. She had—starting to have a quality of life. It wasn’t until she was totally off the pharmaceuticals. Now she sleeps through the night. Her EEGs have drastically changed. From what they were to what they are now, it’s miraculous, because, like I said, she’s on no pharmaceuticals. She’s only on cannabis oil, and her EEGs have drastically changed. She reads now for the first time. She is able to add simple addition and subtraction for the first time. She wants to learn, and that’s huge, as well. So there’s a lot of positive changes, that we weren’t expecting. We were just expecting a decrease in seizures. We had no idea that we would see all the things that we’re seeing with her now.
AMY GOODMAN: Maddy, what does your medicine taste like?
MADELEINE LIGHTLE: Charlotte’s Web.
DARA LIGHTLE: What does it taste like?
MADELEINE LIGHTLE: Oil.
AMY GOODMAN: It just tastes like oil? And how do you feel living in Colorado? Have you made new friends? Do you miss your friends from home?
MADELEINE LIGHTLE: I made new friends. I miss my friends in Virginia where I used to live. And—but I also like my friends in Colorado.
JUAN GONZÁLEZ: And, Dara, this whole issue of having basically to uproot yourselves to go to another state to be able to have access to this kind of treatment, your thoughts on that?
DARA LIGHTLE: Not everybody can get up and just leave like we did. We were blessed to be able to do so, but there are so many families who can’t just get up and go. And we are happy to be here. We feel blessed that we are one of these pilot families to be able to be trying this out to show the world that this works. At the same time, the fact that we had to leave everything that we know, and people are stripped from their families in order to do this, is ridiculous. It’s ridiculous.
AMY GOODMAN: Well, I want to thank—Maddy, I want to thank you for coming on. And, Dara, I’d like to ask you to stay when we bring Dave Philipps on, as well—
DARA LIGHTLE: Sure.
AMY GOODMAN: —the reporter who’s been following you and Maddy and other families who are doing—who have come to Colorado. How does it feel to be called a “marijuana refugee,” Dara?
DARA LIGHTLE: In some ways it’s painful, and in some ways it’s a blessing. So it’s painful that we have—are stuck here, and we can’t go to Disneyland, we can’t go to a funeral, we can’t go to a wedding, if it’s out of state. But at the same time, it’s a blessing that we are able to do this oil, and it’s doing great things for our child.
AMY GOODMAN: Could you take the oil with you?
DARA LIGHTLE: No, it’s a Schedule I drug. It’s federally illegal. It’s legal here in Colorado, but we can’t leave the state.
AMY GOODMAN: Well, Dara, stay with us. And, Maddy, thank you so much for coming on Democracy Now!
MADELEINE LIGHTLE: Sure.
AMY GOODMAN: Dara and Maddy Lightle are with us in Denver, Colorado. They can’t leave the state, because if they took the drug that Maddy is using now to prevent her seizures, marijuana, they would be arrested. This is Democracy Now!, democracynow.org, The War and Peace Report. We’ll continue with marijuana refugees in a moment.