Single mom Sarah Ellett knows she’s breaking the law every day when she gives her chronically ill daughter Remie, 3, two tiny drops of cannabis oil. She’s determined to continue, as the treatment has brought her child a quality of life that’s not only tolerable but also often joyful. But now child caseworkers have gotten involved, and Ellett is scared.
“They told me they needed to make sure that Remie wasn’t in any danger,” Ellett (pictured above with Remi), who lives in Nephi, Utah, told People Wednesday about the recent surprise visit from Utah Division of Child and Family Services reps, who she believes were tipped off. “I told them they would have to leave and talk to my lawyer. They were polite and said they were sorry they had to be there, but it did cause me concern. My biggest worry is being unable to continue to treat Remie without being in violation of Utah law. There are a lot of risks there.”
This week Ellett — who herself suffers from a debilitating colon disorder, as do four of her seven other children — went into hiding with her family to try to figure out her next move. “I’m not sure what to do,” Ellett told the Salt Lake Tribune on Tuesday. “One thing I want to do is continue treating Remie, and if I stay in Utah, I can’t keep treating her. … I can’t take that chance because they will take her.”
Ellett did not respond to a request for comment from Yahoo Parenting, but on her Facebook page, she posted on Thursday, “We are safe & Remie is doing well. There will be a public statement later today.”
Remie (Photo: GoFundMe)
In Utah, possession of as little as an ounce or less of marijuana can result in a six-month jail sentence. In 2015 state Sen. Mark Madsen’s medical cannabis bill was one vote shy of clearing the Utah Senate. Since then, according to the D.C.-based Marijuana Policy Project, momentum has continued to build with Gov. Gary Herbert, who has said he would sign compassionate medical cannabis legislation. But nothing is imminent, leaving Ellett to make the difficult decision of whether to move to Colorado or another state where medical cannabis is legal for children — like so many other desperate families around the country have chosen to do for their sick kids.
Remi, whom doctors did not expect to live through gestation, has been diagnosed with several disorders, including thyroid disease, respiratory issues, digestive problems that require a feeding tube, and panhypopituitarism, which interferes with the function of the pituitary gland, causing blurred vision, low blood sugar, stunted growth, and vomiting. After researching the potential benefits of cannabis oil, Ellett registered her daughter with the Oregon Medical Marijuana Program, the only state that permitted out-of-state patients, though that policy has now been discontinued.
The daily doses of oil brought dramatic changes to the young girl’s condition: She was able to walk with a walker, take swimming lessons, sit and focus on activities such as reading a book, and eat enough without a feeding tube to gain a few healthy pounds.
“She started jumping on the trampoline,” Ellett told the Salt Lake Tribune. “She just started being able to make movements. Instead of sitting there, being the observer, she started being a participant in the family.”
Six of Ellett’s children. (Photo: GoFundMe)
According to Michael Backes, a cannabis researcher and author of Cannabis Pharmacy: The Practical Guide to Medical Marijuana, such wild improvements likely have something to do with the marijuana’s phytocannabinoids, or natural compounds, and how they react with the body’s endocannabinoid receptors, which are a series of physical regulatory mechanisms.
“The current thinking is that the phytocannabinoids kind of adjust the thermostat for a range of physiological processes,” Backes tells Yahoo Parenting. “In other words, you can get things shifted toward a normal baseline and have it help with a whole host of conditions.”
He adds, “I’ve heard over and over again from parents, ‘My kid is back.’ I think a lot of it is real and a lot of it may be parents who so desperately want to have their kid healthy. But the truth is that it is providing hope to a lot of these parents with very sick kids.”
The tricky part in this whole equation, Backes explains, is that until these cannabis products can transcend the black market and become studied and regulated, there’s no way to get a consistent dose. So Ellet “doesn’t know what it is, but she knows it’s working,” he says. “We need to know more and to know that we’re not doing any additional harm. Dose, purity, and cleanliness are all important.”
Ellett, for now, is considering her options. Donations to a GoFundMe page will help defray medical and possible moving expenses. (She has been struggling to make ends meet with a part-time, remote job.) She told the Tribune, “I’m a stable person. I don’t want to just up and leave with my children, move them away from the state, move them away from their father. I know her health is more important than our location. I’ve been trying to be patient with the state of Utah, but the more this is going on, the more I know I’m going to be forced into not giving [Remie] the oil.“
(Top photo: Facebook)