How one young man changed Utahns’ minds on medical marijuana without saying a word. Robert Gehrke explains.

Hestevan Hennessy was born with cerebral palsy and spent his life in a wheelchair needing constant care but he changed Utah forever.

(Rick Bowmer | AP) Desiree Hennessy attends to her adopted son Hestevan in 2017. Hestevan died this year and was instrumental in the push for legalized marijuana in Utah.

Throughout his life, Hestevan Hennessy was barely able to utter a word — yet his life spoke to the conscience of the state, changing hearts and minds about the humane treatment of our fellow Utahns in need.

Hennessy was born with cerebral palsy and spent his life in a wheelchair needing constant care. He died last month at the age of 27, but not before he became one of the most recognizable figures in Utah’s movement to legalize medical cannabis.

He was eight years old and in state custody when a young newlywed couple, Matthew and Desiree Hennessy, brought him into their home, despite apprehension about the care he would need. Several years later, after a battle with the state, they legally adopted him.

He loved watching baseball, listening to music, construction work and spending time with his friends, parents and three siblings.

But his spine was badly contorted, protruding through the front of his body, displacing his organs such that doctors said he would eventually suffocate. A full spinal fusion could forestall further problems, but doctors thought he wouldn’t survive the surgery. Eventually, the family found one who would perform the surgery, but the operation left him with agonizing nerve pain and, according to Desiree Hennesy, he would shriek in pain day and night.

“I couldn’t even walk in and touch his head because he would just scream in pain,” she said. “A shower was excruciatingly painful. Laying down was painful, sitting was painful.”

Medication after medication was prescribed but did little to help and one afternoon after church his mother found him in his wheelchair unable to breathe and turning blue. She used a breathing bag to get his lungs pumping again.

(Rick Bowmer | AP) Willow Hennessy sits on the wheelchair of her adopted brother Hestevan, who has cerebral palsy and suffers from chronic nerve pain and a seizure disorder. The pair were at a news conference at the Capitol in Salt Lake City in 2018 to highlight the need for medical marijuana.

They took him off the medications and the pain continued.

A massage therapist he was seeing suggested he try medical marijuana, a notion Desiree thought was so stupid she didn’t dignify it with a response. However, when his doctors recommended putting him back on the medications, even though it could kill him, she came back to the idea — but she did so with some trepidation, fearful of breaking the law and risking the state taking her three young kids.

She tried legal CBD, with little effect, and she got involved in the movement to legalize medical marijuana. She and Hestevan would sit outside grocery stores gathering signatures for a ballot initiative and everywhere they went would hear stories of people whose nerve pain had been helped by using the drug.

Before one two-hour drive back to their home in northern Utah, Hestevan was again screaming in pain and she gave in, giving him a small cannabis drop in his feeding tube. It worked almost immediately. From then on, when his pain was too intense, they would turn to the medical cannabis and the improvement was profound.

“I can remember the day he laughed again and I thought, ‘We have been in this utter hell for almost a year and here he’s laughing and joining in on a dance party,’” Desiree said. “I thought we’d never get those back because the doctors, their kindest offer was to give him these medications until it kills him, but he’d be out of pain. Here I found something that not only wasn’t going to kill him, he was living again.”

They continued their advocacy and Desiree said she could see how hearing Hestevan’s story was changing other people’s perspectives, as well. Here wasn’t a kid just looking for a legal high. How could they support the state telling him and his family no? They became the most recognizable duo at the Utah Capitol, as Desiree lobbied for legalization, testified at committee hearings and spoke at rallies.

“It was impossible for anyone to meet him and not clearly see that he — and so many other patients like him — needed a legal path to using medical cannabis,” said Connor Boyack, president of the Libertas Institute and a leader in the legalization efforts. “The before-and-after difference was compelling and Desiree saw firsthand with Hestevan how important this option is for patients who can’t find other remedies for their suffering.”

Hestevan liked the outings, meeting people and spending time with his mom.

After years of frustration at the legislative level, in 2018, 53% of Utahns voted in favor of a ballot initiative to legalize medical marijuana. And while the Legislature later rewrote the initiative, the end result was that the Hennesys and thousands of families like them would no longer have to break the law in order to get relief.

“[It] not only made him comfortable but allowed him to live,” Desiree told me. “I mean he had fun, he was able to have adventures because of medical cannabis. And I think his role in fighting for medical cannabis, even if he didn’t understand what he was doing, being the face for medical cannabis … he extended other people’s opportunities to live as well. Not just be alive, but to live.”

Last month, the family was boiling Easter eggs and Hestevan was lying on his bed, where they planned to watch a movie together. When they came back to his room, he had passed away peacefully, a week shy of his 28th birthday.

(Steve Griffin | The Salt Lake Tribune) Salt Lake County District Attorney Sim Gill talks with Willow Hennessy and her adopted brother Hestevan prior to a news conference on May 8, 2018.

“There have been many faces of the effort to legalize medical cannabis, but Hestevan’s was perhaps the most recognizable, enjoyable, and persuasive,” Boyack said. “He leaves a powerful legacy through his mother’s continued work to help other patients like him.”

Desiree was grateful her son was able to find some quality of life for his last seven years and proud that he was, in his own way, able to help others find the same.

“I don’t know how to put this,” she said, “but it’s easy when someone like him lives and dies to not leave a footprint anywhere. But he did. And now forever you can Google his name and he comes up. For him, this movement made it so he can’t ever be erased.”