Shelley Gillen is the mother of Will Gillen, a 12-year-old boy with a rare form of epilepsy. He recently lent his name to a legislative bill that would legalize cannabis oil, an anti-seizure medication, in Nebraska. The bill was withdrawn in February, but Shelley continues to fight for the right to treat her son with medical cannabis. She recently spoke with the Daily Nebraskan about her son’s condition and her changing opinion of marijuana.
Daily Nebraskan: Can you tell me about your son’s condition?
Shelley Gillen: He has Lennox-Gastaut syndrome. It’s a rare seizure disorder. It involves multiple types of seizures along with developmental delays.
DN: Do you know what his long-term prognosis is?
SG: We don’t know. We do know that he’ll be dependent on us for the rest of his life. He’s cognitively about a 1 or 2 years old, and he’s 12. He was diagnosed at about 4 months old. I’m about as far from your typical medical marijuana advocate as you can get. I’m a regular mom – I have four children; I run a home day care; I have a degree in elementary education. We have tried everything for our son, and then we were exposed to the fact that some children were taking medical marijuana, and it was working, and it was just very frustrating to know we didn’t have that option. We realize that maybe it wouldn’t even help Will, but he at least deserves a chance to try it, especially after exhausting so many options.
DN: How did you feel when he was diagnosed?
SG: It was devastating. When you have a child you have certain dreams for them, and those dreams change when you receive a diagnosis like that. Our main goal was to always try to give him the best quality of life possible, in spite of knowing that he was going to have seizures most likely on a daily basis, which he does. We try to be as normal or typical as we can, but you have to make lifestyle adjustments to do that with a child with special needs.
DN: How would you describe his quality of life?
SG: His quality of life is good as far as being taken care of. It’s poor as far as being protected from the seizures. They occur on a daily basis. He has a full-frontal facemask helmet. He has a medical bed – that’s an enclosed bed that we zip up that he sleeps in at night. You never know when the seizure’s going to happen. That’s the part that is scary, and we have to be on guard all the time. We have blankets that cover our fire place so he doesn’t fall into the fire place when he has a seizure. He’s face planted on the kitchen floor several times; his head has bounced off counter tops. We’ve had to make a lot of adjustments to protect him, but it’s not possible to do it 24-7. He doesn’t talk; he’s nonverbal. He’s incontinent, still in diapers. That’s not the kind of life that a young boy deserves — to have to live that way, never knowing when a seizure is going to come and whether or not it’s going to cause physical injury.
DN: Does he have seizures in his sleep?
SG: Probably almost every night. Some nights we’re up with him, if we hear him. He’s a mover, he wanders, he doesn’t sit down a whole lot. He would just wander around his room until he fell in a heap on the floor, asleep. Before we had the bed, we would wake up to bruises on his face and goose eggs on his head and cuts. Now we’re able to actually put him to bed at night. We still get up at night if we hear him. At least we know he’s safe in there.
We have an emergency medication on hand, a rescue med. We haven’t had to use it too often. A lot of his seizures are in clusters, where he has short ones and then a couple seconds later he’ll have one again. If they last five minutes or longer, we’re supposed to give him the rescue med. We’ve only had to give it to him a handful of times. He suffers multiple seizures every day. They range from little head drops that look like he’s nodding off to the more well-known ones, grand mal seizures. Those last for probably a minute and a half. It feels like an eternity.
DN: What is a typical day like for Will?
SG: When I get him up for school, I unzip the bed, get him out, change his diaper and dress him. He wears his helmet as soon as I get him out of bed and dressed. He gets his morning meds with his breakfast. We wait for the bus to come, and I walk him out and get him on. He’s in a self-contained classroom with probably 11 children, and they all have special needs. When he comes home, we feed him dinner. He has to be fed; he can’t eat by himself. Everything has to be chopped, has to be soft. He has chewing issues. He gets his bath. He has a special bath chair we buckle him into. After his bath he gets a bedtime snack, and we read him a story. That’s a pretty typical day for him.
DN: What is school like for him?
SG: There’s only 11 children. There are four or five paraprofessional educators, so he gets a lot of one-on-one help. He has an IEP (individualized education program). Our goals for him to reach are life skills. He doesn’t learn how to read or how to do math; he learns how to request for something he wants. We use a picture system. He’s somewhat inconsistent, but he will grab a food picture if he’s hungry. He will take our hand and lead us to the kitchen when he’s hungry. At school, they have three classrooms he rotates through. One of them is an office that has cubicles, that’s where they do their IEP work. He works on crushing cans, something that he may do some time in the future as a vocational task. They have a literacy room where they do calendar time or read stories. They have a recreational room, which is the physical therapy part. They might have a swing or big bouncy balls.
DN: To what extent would you say he’s self-aware?
SG: Probably more so than we give him credit for. If someone were to meet him for the first time, they would probably mistake him for someone who’s severely autistic. He doesn’t play with toys like a typical child. He likes toys that light up; he likes things that spin. If he has a toy, he spins it. He doesn’t like too many things; it’s hard to keep him interested. He’s moving all the time, jumping, running, which requires 24-7 supervision because he has no sense of danger. He wears a GPS tracker on his ankle so if he were to get lost we would be able to find him.
DN: Is he currently taking medications?
SG: Right now he takes 22 pills a day. He’s on four different seizure meds, and he’s also on a laxative med and a med for drooling because those are side effects of his seizure med. To be honest with you, we know for sure that one med is working, but the other three, we have no idea if they’re helping or not, which is also frustrating. Especially after knowing what we know about medical cannabis. Back when Will was first diagnosed, you just fully trust the doctors. They just kept adding the meds on and as a parent, you have faith in the doctors that they know what they’re doing. Now, on this journey, I take a little more firmer stand when they prescribe him a new drug. I research it – the side effects – I want to know if we can wean him off another one. If we were ever to a point where we could wean him off, and if medical cannabis could work, it would take years to wean him off them. Especially because he’s been so dependent on them for the last 12 years.
I’m sure the meds he’s on are hard on his inner organs. We have lab work done, blood tests done, to make sure all his organs are functioning properly. We don’t know for sure what the long-term effects of him being on these will be. That’s the argument they have about medical cannabis, they don’t know what the long-term effects are. But we don’t know what the long-term effects are of what he’s already on.
DN: How did you find out about cannabis oil?
SG: I belong to a lot of online support groups with parents who have children with seizures. The groups were talking about a special coming up on CNN, Sanjay Gupta’s “Weed.” They were talking about little girl in Colorado who was being helped with medical cannabis for her seizures. I told my husband about it, and we watched it, and we were just absolutely fascinated by it. I said, “We gotta try it. There’s gotta be a way for Will to try this.” Living in an illegal state, it was very frustrating. That’s how I first heard about it. Then I started noticing other people in other states were starting to introduce legislation, other parents were. And I hadn’t heard anything going on in Nebraska. I thought, “I’m gonna do something.” I wrote a letter and emailed it to every newspaper editor. I didn’t hear anything the first time, and then I emailed it again and I got a phone call from our local newspaper, the Bellevue Leader. And from there it snowballed. Once the story got out there, other people got a hold of it. I had interviews left and right. I knew the first step was to get the media’s attention.
I am a home day care provider. My husband’s a teacher as well. I didn’t want people to get the wrong image of us; I was concerned. I was very clear on educating the two main points, that it didn’t make you high and that it came in an oil form. Those were the two things that anybody who didn’t understand it at first, once I explained those two things, they understood and once they heard our story. I knew I had to do it, Will deserves to have that option, and so do others.
DN: How did you get into contact with Sen. Crawford about sponsoring a bill?
SG: I contacted the media in October, and in November we got a letter in the mail saying Sen. Crawford was going to have a town hall meeting. I asked my husband if he thought we should go and he said yes. We took Will. There were about 20 people there. I read my story, and that’s how it all started.
DN: What was the initial reaction like at the town hall?
SG: People were very supportive. It was very emotional reading Will’s story. I kept it very personal because this was our life. It’s almost a blessing that I have no political background at all. The only thing I could do is speak from the heart. We did not hear of anything oppositional. People thought it was interesting that it came in an oil form. The stigma is that it’s always smoked.
DN: What were your expectations like when Sen. Crawford introduced the bill?
SG: I started sending her newspaper articles about other states that were doing it, in particular Utah and Alabama. I asked her if she would introduce legislation. Our biggest problem was that we came so late into the year and the legislative session started in January. We knew that the clock was ticking. She went ahead and wrote the bill, a very narrowly scoped bill. I wasn’t comfortable with how narrowly scoped it was because of the requirement to have a Level 4 Epilepsy Center support it. We only have one, University of Nebraska Medical Center, and there was a pretty good chance they were going to say no and they did. She went off of Utah’s model, and their Level 4 center did support it, and she hoped that UNMC would too. I would like to see the bill re-authored and some changes made. I would like to see a higher percentage of THC (Sen. Crawford’s bill allowed for a maximum of .3 percent THC content). Alabama even has it at 3 percent. It has to be 5 to 10 percent to even get high, and it would cover a lot more conditions than just epilepsy. Nebraska might not go for that. We might have to settle for something that’s very narrowly scoped.
DN: If the bill were rewritten, would you want someone else to write it?
SG: If Sen. Crawford were willing to do that, that would be great. If not, we had Brad Ashford and Ernie Chambers co-sign it as well as Colby Coash, Norman Wallman and Tommy Garrett. In the short time that the bill was out we had five co-sponsors. Ernie Chambers and Tommy Garrett were very interested in supporting it. Depending on what he says, I would feel very comfortable going to Chambers or Garrett.
DN: I read that you received a letter from the Governor. Can you tell me about that letter?
SG: He didn’t firmly state one way or the other that he was supportive of it, but what I took away from it was that he was not because he told us how it’s a Schedule I drug and how there are trials going on for a drug called Epidiolex, a drug that’s being made by GW Pharmaceuticals, and for us to wait until trials are ready to have Will go on that. That might not be for another three or five years. He said, “Discuss it with your physician.” Well of course we discussed it with our physician. We discussed every option with our physician. I got the feeling that he was not supportive of it at the time.
DN: How did you feel when Sen. Crawford told you she was going to withdraw the bill?
SG: She did come to our house to deliver the news. We did not feel completely hopeless because she was directing us toward the hemp bill, so we felt like, OK, she’s telling us we could probably get help through the hemp bill. We were really hoping that would be our loop hole in. Now we’ve come to find out it won’t because that’s so narrowly scoped as well. If we had known that the hemp bill wouldn’t have helped us, we would have begged her not to withdraw it. The biggest thing against us was that UNMC would not support it. It’s hard for us to understand why they don’t want to be more interested in it, especially when there’s so many other university hospitals in the country that are. And UNMC wants nothing to do with it. It’s a leading university hospital; people come from all over to receive treatment there.
DN: You mentioned that Sen. Ashford granted an interim study. Can you tell me more about that?
SG: My understanding is that for the bill, because it’s an interim study, it can still be reintroduced in January. It will give us time to look at what other states are doing and gather more information and have a public hearing in October. I would guess he hopes to educate the public more about it.
DN: Is marijuana an issue that was on your radar prior to finding out about cannabis oil?
SG: No, never even crossed my mind.
DN: Do you consider yourself a supporter of medical marijuana?
SG: I just become more and more amazed at all that I keep learning of what cannabis can do, medical-wise. And I just had no idea. I grew up with the same stigma that marijuana was bad, worse than alcohol. Stay away from it; there’s nothing good about it. And now the more that I learn about it, the more I understand that it’s actually safer than alcohol and it has so many medicinal qualities. And what’s was so frustrating, is having it as a Schedule I drug, which means the drug has no medical value, and obviously that’s not the case. At first if the bill was just for epilepsy, I was OK with that. The more I read about it, why can’t people with multiple sclerosis, cancer or Parkinson’s disease be helped with it? All I know is epilepsy; I will just cover that and educated about that. But if others from the cancer community, from the MS community were to step forward, then by all means I’d say, “Let’s do it.” But I haven’t had anybody do that. I don’t know if that’s because of the state that we live in or what. I’m not as fearful about marijuana as I used to be at all, with how much I’ve educated myself about it.
Does it have to be recreational? No. I just think we have the potential to have a responsible medical marijuana program that’s doctor recommended.
DN: Why would you say you’re opposed to recreational legalization?
SG: In a perfect world, I would rather have recreational marijuana be legal than alcohol. Am I going to jump on that? No. I’m not there, that’s not what my drive is behind doing this. I want it for medical reasons, even though I have come to believe that it’s safer probably than alcohol. That’s just not something that I’m willing to put a lot of energy into trying to get done.
I’ve had to separate myself. I’ve had a lot of phone calls form those who want it recreationally. I don’t want my son’s condition and other’s conditions to piggy backed onto to get legislation passed for recreational use. I don’t feel like that’s right.
DN: Have you thought about putting together some type of political group?
SG: I’m trying to form a group right now called Hope for Epilepsy in Nebraska. I would like to create a Facebook page for it and just try and draw support for trying to get legislation passed. I’m just going to do epilepsy — I don’t have any experience with any other illnesses at this point, gratefully. I know Utah has a strong organization called Hope 4 Children with Epilepsy. But you have to have a .3 percent THC level or less to be in this organization, and what I have learned is that you want a little more THC because some kids are going to need a little more than .3 percent. Just because they need 1 percent, they’re still not getting high. Alabama’s is 3 percent or less. That way our kids and adults with epilepsy will have a little wiggle room with THC. You can’t have too much THC with epilepsy anyway because it could trigger seizures. It takes a lot of fine tuning, and that’s why I wasn’t big on joining Hope 4 Children with Epilepsy, with .3 percent or less. I think adults with epilepsy need help as much as kids and I think they need a little more THC.
DN: Are you hopeful for the future?
SG: Yes, I am. I think change is finally coming, more and more states are introducing and passing the legislation. Iowa even has a bill that it looks like has a good chance of passing. My feeling is, in five years, hopefully this is all a moot point and it’s mainstream by then. More and more people are standing up and being vocal about it, especially those from the communities that have illnesses.
All of these states passing legislation, it’s only a matter of time before the federal government has to address it.
arts@dailynebraskan.com
Nebraska mother fights to legalize cannabis oil for son
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