When she was born, doctors didn’t expect Remie Miette Ellett to live. In anticipation of her death, her mother gave her the name that means “sweet little remedy.”

“I just really wanted her to have a pretty name I could remember her by,” Sarah Ellett says. “She has proven she is really just what her name says.”

Remie didn’t die, but was diagnosed with multiple dangerous and damaging conditions. After spending the majority of her short life in hospitals, at almost 4 years old she is walking, playing and eating and drinking through her mouth for the first time. She loves music and playing with her brothers and sister, small yet miraculous feats for a child in her condition. Today Sarah Ellett’s life is filled with the joy of Remie’s improvements and a chance at a real future, but also the fear of having her removed from her care and taken into protective custody. The stakes are high and the political reality of Remie’s situation means the Elletts live in constant fear. In Utah, where they live, Remie's miracle medicine, cannabis, is illegal.

After extensive research, Ellett obtained a small amount of cannabis oil to try for Remie. The results were instant; Remie started achieving milestones she was unable to accomplish before. Ellett took her children to Oregon last summer to register with the Oregon Medical Marijuana Program. At the time, OMMP was the only state-facilitated medical cannabis program that allowed out-of-state patients to enroll. Ellett spoke with a doctor and began giving Remie oil in Oregon, and Remie began to thrive.

Despite the amazing progress, Ellett has stopped giving Remie the oil because she doesn’t want to break the law in Utah and risk her daughter’s life in protective custody. The out-of-state policy was discontinued Jan. 1, 2016 as part of the rollout of Oregon’s new adult legalization law; the Elletts will not be eligible to enroll again going forward. If Utah doesn’t pass proposed medical cannabis legislation this year, she says her family will be forced to move.

“I knew we couldn’t stop it [the cannabis], we had seen too much progression and I knew I would be harming her if I stopped giving it to her. I just really didn’t want to do that. I also knew I needed to do something legal,” Ellett says of the decision to go to Oregon. “I just had this really strong feeling if we didn’t give it to her we would regress… the progress she has made has just been so phenomenal.”

In response to growing demand for medical cannabis legislation, Utah legislators passed H.B.105 in 2014, which legalized high-CBD medical cannabis extracts so low in THC they can be arbitrarily classified as industrial hemp. Remie does not qualify under the law, nor would her medicine.

In response to growing patient demand for whole-plant medical cannabis, Utah State Senator Mark Madsen proposed S.B. 259 in 2015, which would have legalized production, distribution, manufacture and possession within the state. More conditions would qualify and Remie would have safe legal access. The bill was narrowly defeated by one flipped vote in the senate, despite overwhelming public support. Madsen’s Medical Cannabis Act is going back to the Utah Senate on January 25. In the 2016 legislative session, which is just over a month long in Utah, there are already two medical cannabis bills proposed—one is not patient supported and would extend the current CBD-only laws. The other, Sen. Madsen’s bill, is supported by a growing body of patients in Utah, including the Elletts.

Sweet Little Miracle

Sarah Ellett was born and raised in conservative Utah County, just south of Salt Lake City, in the Church of Jesus Christ of Latter-day Saints. Growing up she knew marijuana was against the code of conduct for members of the LDS church, so she stayed away from it.

Before Remie was born, Ellett worked full-time and provided for her family. She and four of her children have been diagnosed with familial polyposis (FAP), a genetically inherited condition that leads to polyps and cancer throughout the colon. Ellett had her colon surgically removed at 40 and still contends with health issues daily. After Remie was born in 2012, she spent the first five months of her life in the neonatal intensive care unit and then lived primarily in hospitals until the age of 2, when her condition stabilized slightly.

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“Every other week she would have some sort of episode and go into adrenal crisis. We would just end up in the hospital for months,” Ellet says.

Daycare was not an option, so Ellet had to quit her job to care of her full time. Remie receives most of her nutrition through a feeding tube and requires around-the-clock care. It takes a team of over 20 physicians to care for her, but only one person is capable of safely managing her day-to-day care—her mother.

The medications begin first thing in the morning. Remie receives a dose of hydrocortisone to control her blood sugars and stress levels, followed by medications for thyroid function and to maintain water and sodium levels. She receives an injection of growth hormone every night to help maintain her hormone levels and help her grow. Much of her physical and developmental growth has been slowed by her many illnesses; she is chronically underweight and small for her age. Her muscles are weak and until recently she was unable to walk on her own. For a brief period while taking the cannabis oil, she began to steadily gain weight, but has since been losing it again.

While the medications are helpful, they come with side effects. The growth hormone shots are painful and the long-term effects are still largely unknown, although some confirmed effects are increased risk of diabetes, joint swelling, pain and immune reactions. The hydrocortisone controls her blood sugar, but often causes “roid rage” or moody episodes that make her agitated and hyperactive.

On cannabis oil, her mother says she is playful, hungry, active and happy. Although she doesn’t believe cannabis would replace all the medications, Ellet believes she could use fewer of them and give her daughter a far better quality of life.

“The solutions don’t always have to be as complex as the problems at hand,” Ellet says of using cannabis oil. “They can even be pleasant and without [negative] side effects.”

Out-of-State Remedy

Ellett and her children visited family in Oregon over the summer to legally use medical cannabis and consult with doctors and other patients familiar with pediatric cannabis use.

“When we first started this, Remie could stand, but she had only taken one step her entire life. Now she lifts up her feet and walks. She practically runs down the halls,” Ellett says.

Before, a fall typical of a toddler playing and walking could result in a hospital trip. Today the falls are solved with kisses and band-aids, just like other kids her age.

“Before she didn’t really make many efforts to say a lot of words. Now she communicates her needs.”

Remie has difficulty swallowing and relies on a surgically implanted feeding tube in her stomach for nutrition. Ellett says that on cannabis Remie chews, swallows and has fallen in love with eating—a previously foreign concept. They would experiment with eating before but she would have to be closely watched, so she wouldn’t choke trying to swallow.

“There were times it was just plain scary to feed her… [on cannabis] she started eating and swallowing food like crazy, finishing plates. She has been able to drink water safely through her mouth—she has even been able to take swim lessons,” Ellett says.

More importantly, cannabis helps manage Remie’s pain. It was discovered in the hospital that Remie’s body couldn’t properly metabolize morphine or painkillers, and more than once she has suffered respiratory arrest as a result. Despite the numerous surgeries required to repair her lip and palate, she has very few legal options to manage her pain.

Political Realities

If Ellett continues to give Remie cannabis oil while living in Utah, she risks arrest and the forcible removal of her children by child protective services. Ellett believes Remie will die if she is taken into protective custody. If Remie's medications aren’t administered properly, if she isn’t watched closely—if whoever is tasked with her care is incapable of the day-to-day care Ellett has crafted with her team of specialists, she says her little girl's life is at risk.

“Even professionals who know her well don’t know how to deal with her overall situation,” Ellett says.

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Ellett could also benefit from using cannabis, but chooses not to try it in order to protect and promote the medical needs of her daughter. She still develops polyps in her remaining intestines and works around the clock to provide medical care for Remie, which is physically exhausting in her condition. She says the laws in Utah leave her living in a constant state of terror.

“It’s something I try not to think about. I just want to pretend it will all work out and just be fine [if Madsen’s bill doesn’t pass]. But I know it won’t. I have a really good situation here—I own my home, my children do really well in the schools here, they have complete stability. We are financially stable, but if we were to move we would not be able to provide for ourselves as much.”

She says it is difficult to watch the progress Remie has made start to fade now that she is no longer taking the medicine. “When she cries she just says it hurts.”

Ellett says if Madsen’s bill doesn’t pass, she will be selling her home and moving to a state where it is legal.

“We are going to have to sell our house and make the sacrifice. We will try to make ends meet, but I don’t know what we will do."

Last year, Ellett and Remie’s representative in the state senate, Senator Ralph Okerlund, voted against the bill. She has been attempting to set up a meeting with him to introduce him to Remie and tell her story, but so far she has not received a response. She says if he won’t meet with her, she wants him and other legislators at least to know about Remie. She plans on advocating for Sen. Madsen’s bill at the capitol in Salt Lake during the legislative session beginning January 25.

“I want him [Sen. Okerlund] to know that because of [cannabis] oil my daughter’s life has been significantly improved. She is not going to be as much of a burden to society as previously thought and she could actually have a really good quality of life. I hope he would look outside his typical, traditional views of cannabis and take a look at this real-life experience and to come and meet my daughter,” she concludes.

The Elletts have set up a GoFundMe to help with medical and potential moving expenses.