Rick Bowmer | AP Photo Desiree Hennessy, left, attends to her adopted son Hestevan, who has cerebral palsy and suffers from chronic nerve pain and seizure disorder, during the Utah Patients Coalition news conference at the Utah Capitol Monday, June 26, 2017, in Salt Lake City. A group of activists and Utah residents with chronic conditions has launched a ballot initiative to ask voters to pass a broad medical marijuana law.

Hestevan Hennessy lives his life in a wheelchair, unable to communicate and in constant pain.

And those are the good days.

Now and then, the 23-year-old — who suffers from cerebral palsy — has his sciatic nerve flare up, sending shockwaves through his body, causing him to cry out and convulse.

His body rejects pain medications and he screams in agony until he vomits them up through his feeding tube. Ibuprofen can help, but after a day or two it shreds his stomach lining and blood flows out of his stomach and into the tubes.

All his mother, Desiree Hennessy, can do when the pain comes is try to soothe her son.

Cannabis has helped other patients coping with cerebral palsy, and Hestevan’s doctors all say it could work for him, too. But his father, a firefighter, fears he could lose his job if they try to give their son marijuana. Or worse, says Desiree, the state could take him away and, in his fragile condition, it could be a death sentence.

“It’s so infuriating to me. I’m not asking for access from [his doctors]. I’m begging politicians. I’m begging politicians to let me medicate my son,” she said. “It’s so hard to wrap my brain around.”

Gov. Gary Herbert has never met Hestevan or Desiree, but if he had, it’s hard to imagine that he would have come out so forcefully against a ballot initiative as he did last week.

“I would love to meet with the governor,” Desiree Hennessy told me. “I’d love to go line by line through the initiative with him and show him why, for our family, it is our one chance for hope.”

It’s hard to imagine that Herbert would have been able to look them in the eye and tell them that the ballot initiative seeking to make Utah the 29th state to legalize medical marijuana would, as Herbert put it, “do more harm than good.”

And he certainly wouldn’t have glibly dismissed the day-to-day struggles of the Hennessys and hundreds of Utahns like them, as he did in 2016, saying: “I’m not interested in having Dr. Feelgood out there say ‘Yeah, yeah. Qué pasa? You know, here’s your doobie for the day and you’ll feel better.’”

The governor’s objections to the marijuana effort boil down to fears that it goes too far, that there could be unintended consequences and that, if it passes, it could put Utah on the road toward recreational pot.

The conservative Sutherland Institute and the Utah Medical Association joined Herbert’s criticism of the initiative in what is likely just a taste of the coordinated attack we’ll see on medical cannabis efforts.

“Gov. Herbert didn’t take a stand against medical cannabis,” says Desiree Hennessy. “He took a stand against patients who need medication, and he knows that.”

The better path, in Herbert’s mind, is the arduously slow, incremental approach, where every inch of progress is measured in years while those like Hestevan are told to be patient.

This year, the Legislature finally passed a law allowing those with terminal conditions and six months or less to live to try cannabis. It’s a macabre right-to-try-as-long-as-you-die bill that does nothing for anyone with a chronic condition.

And for turning their backs on the vast majority of possible patients like Hestevan, lawmakers congratulate themselves for a job well done.

Polls consistently show that upwards of 75 percent of Utahns support legalizing medical cannabis, and there’s good reason for that: Utahns are compassionate. When there is suffering, we want to help, and those Utahns view the Legislature’s piecemeal approach as too slow, too inhumane to those who could be helped.

Organizers are very close to collecting the 113,143 signatures they need to get the measure on the ballot. (You can contact organizers here if you want to sign the petition.)

If they get their signatures, it will be the voters’ turn to enact compassionate policy where our elected lawmakers have so tragically failed.