Health & Medicine

‘Nobody knows when they’re going to be the family whose last resort is cannabis medicine’

Silas Hurd, stricken with epilepsy, has become a focal point in Nevada County marijuana battles

Silas Hurd suffers from a severe seizure disorder that has stunted his development and put him at risk of early death. His parents have taken a lead in fighting a Nevada County ballot initiative they say would hurt efforts to craft special marijua
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Silas Hurd suffers from a severe seizure disorder that has stunted his development and put him at risk of early death. His parents have taken a lead in fighting a Nevada County ballot initiative they say would hurt efforts to craft special marijua

Silas Hurd’s “golden ticket” was losing its luster.

The Medi-Haze B provided by Grass Roots Solutions, the Nevada County medical marijuana collective rallying to help the boy, wasn’t having the same effect. His seizures returned in late 2015 following a four-month respite that had brought his parents so much hope.

But Nicole and Forrest Hurd still believed in the potential of CBD – a compound in marijuana that has shown medicinal promise in limited childhood epilepsy studies – to help their son.

Grass Roots Solutions crafted new CBD-rich tinctures from specially cultivated cannabis strains, and Forrest and Nicole wove them into Silas’ therapy. His seizures continued but were less frequent, less violent.

Silas began to recognize when the seizures were coming on. He would seek out his parents, sometimes showing up at their bedside at 4 a.m., to get help with an impending attack. He found ways to express his thoughts on what was happening.

“There’s a spider on my brain,” he told his mom.

He surprised his doctors at the UC San Francisco Pediatric Epilepsy Center by asking if they “could get the mouse” out of his head.

Dr. Joseph Sullivan, Silas’ neurologist at UCSF, said the marijuana tinctures Silas was getting in Nevada County appeared promising “as an add-on treatment” to his ongoing care. He believed that the absence of the most violent seizures that once regularly shook Silas’ frame were evidence that the tinctures were having “a significant impact.”

“If I trust a family and they are reporting improvement, that’s what I have to go on,” Sullivan said. “It is already anxiety-provoking for them to feel they have to procure their children’s medications” from marijuana growers.

In January, as the boy’s attacks were resurging in intensity and number, the Silas project faced another challenge: a deepening clash over Nevada County’s pot culture.

Sheriff Keith Royal had long been a leading skeptic of California’s Compassionate Use Act, arguing that the state’s medical marijuana setup served as a cover for pot growers wanting to make money and stoners wanting to get high.

In Nevada County, he said, an influx of rogue growers were flouting cultivation limits and trafficking pot on a black market for out-of-state consumers willing to pay top dollar for prime Northern California cannabis.

County supervisors also complained, saying they were getting an earful from constituents who felt the explosion in pot farming had become a dangerous intrusion on community life. In many ways, the sheriff served as a voice for that frustration, asserting the county was paying a steep price for having loosened its outdoor medical marijuana cultivation regulations in 2012.

On Jan. 12 this year, Royal called upon the Board of Supervisors to take dramatic action.

Just a few months before, Gov. Jerry Brown had signed the state’s first-ever regulations to govern medical marijuana growers and other pot businesses, establishing rules that would allow them to earn legal profits. Come fall, California residents were expected to vote on a statewide initiative that would legalize marijuana for recreational use, but still allow counties to ban outdoor cultivation.

That January day, supervisors were considering an ordinance that would impose an outright ban on outdoor marijuana growing, prohibit any form of commercial growing and set restrictive plant and wattage limits for indoor grows. The aim was to drive big pot farms out of the county and kill the incentive for others to come.

The illegal herbicides and pesticides ... . The trash. The human waste. The loss of wildlife. All of that is what we’re faced with.

Dan Miller, chairman, Nevada County Board of Supervisors

Supervisor Ed Scofield, a Grass Valley native and former head of the Nevada County Fair, had supported the permissive cultivation rules in 2012. Now, he regretted his vote. “I have so many constituents who have to deal with marijuana growers around them,” he said. “It’s gotten beyond control.”

The prospects of an outdoor ban were especially worrisome to Forrest and Nicole Hurd. Grass Roots Solutions members said the restrictions would imperil their ability to produce tinctures for Silas, whose seizures once were so frequent and catastrophic that he largely lost his ability to speak. They believed the CBD-rich strains that were proving effective needed the full-spectrum light of outdoor gardens and couldn’t flower indoors, particularly with the county’s 1,200-watt lighting cap.

The proposal raised other concerns for the family. The collective was providing Silas with cannabis low in THC, the potent compound that produces the high so many users want. If cultivators were limited to 12 indoor plants in garages and greenhouses, would they have the space or incentive to grow cannabis low in THC?

 
PAUL KITAGAKI JR. pkitagaki@sacbee.com
Silas Hurd, a 9-year-old who suffers a severe seizure disorder, has become the focal point of a contentious battle over pot cultivation in Nevada County.

What about cost? Grass Roots Solutions was providing Silas’ special tinctures for free. Before they stepped up to help, the family was paying more than $300 for a 12-day supply from marijuana dispensaries outside the area.

Was it time to leave the county? Should Nicole quit a job she loved – one that provided the family’s medical insurance – so they could search for solutions elsewhere?

Forrest decided to take a stand.

On the day of the vote, advocates, patients and growers crowded into the Board of Supervisors’ chamber in Nevada City. They argued against the ban, imploring the sheriff to target crooked growers and traffickers, not those with legitimate medicinal gardens.

Forrest made his way to the microphone. He had fashioned a cardboard photo collage of Silas, who wasn’t in attendance. “Behind me is this picture I thought I’d share of what a cannabis patient looks like, one that can’t advocate for themself,” Forrest said.

“I don’t know how to explain to you the terror a parent goes through,” he said. “We watched helplessly as the seizures washed away his cognitive ability, his ability to speak, his ability to move the way he had before.”

Forrest recounted how conventional medications had failed and how his search for help had led him to “lawful citizens” growing marijuana in Nevada County.

“I wish we would separate the word ‘medicine’ out of this, because the problems we have are due to people who abuse the law,” he told the supervisors. “That has nothing to do with medicine. This young man needs medicine, and I hope you take that into account.”

 
PAUL KITAGAKI JR. pkitagaki@sacbee.com
Sheriff Keith Royal has led the effort to rein in pot cultivation in Nevada County, contending California’s medical marijuana law is being used as a cover for illegal profiteering. “This isn’t about medicine – it’s about money,” he said.

A visual indictment

Even advocates for medical marijuana concede that Nevada County has a pot problem.

Royal has described the area as suffering from unchecked environmental destruction, water theft and crime. He reported more than 330 complaints in 2015 related to pot farms, pollution, odors or the homeless “trim-migrants” who stream in to harvest the buds. Officers issued more than 70 citations last year for farms exceeding cultivation limits.

At the Board of Supervisors meeting, the Sheriff’s Department offered a visual indictment of the county’s cannabis culture via a PowerPoint presentation. It included a Google Earth photo of the county’s Greenhorn/Rollins Lake area. Digital thumbtacks on an aerial picture of the sensitive watershed marked well over 60 marijuana farms carved into the woods, near creeks, streams and family campgrounds.

Another photo showed a house engulfed in flames from a butane explosion caused by a cannabis honey oil lab. Others showed marijuana grow sites strewn with garbage and pesticide cans. A sheriff’s supervisor ran through a list of news links about pot raids and criminal cases.

Among the people prosecuted in recent years was John Gross III, a resident of Rough and Ready, sentenced in 2014 on federal drug charges in connection with the seizure of 2,800 marijuana plants and another 100 pounds of pot destined for a Sacramento dispensary. Another 4,100 plants were seized in 2014 from properties tied to a Nevada City woman, Patricia Albright, 64, who pleaded guilty to illicit cultivation and illegally structuring banking deposits to avoid federal reporting rules.

Royal didn’t see much difference between the big, profiteering marijuana producers and a collective of local cultivators working on the Silas project. In an interview, he characterized Grass Roots Solutions the same way he did most pot growers. “The association isn’t about medicine,” he said. “It’s about money.”

It was a forceful presentation. The supervisors voted 4-1 in favor of the sweeping new restrictions and a ban on all outdoor cultivation.

“My gosh, look at the pictures,” said board chairman Dan Miller, referring to the Sheriff’s Department PowerPoint. “The illegal herbicides and pesticides that are not supposed to be there. The trash. The human waste. The loss of wildlife. All of that is what we’re faced with.”

The vote left Forrest and Nicole reeling, wondering what to do next.

‘I stand with Silas’

Not long after the hearing, Forrest received a call from Heather Burke, a Nevada County medical marijuana lawyer. Burke had seen a lot of advocates “get on their soap boxes,” droning on in the abstract about pot’s medicinal benefits and the rights of marijuana patients.

In Forrest, she saw something different, a sympathetic, articulate figure, completely on point about his son’s needs. “He was so considerate and so compelling,” Burke said.

Along with the ban on outdoor and commercial growing, the supervisors had voted to put an initiative on the June 7 ballot that would reinforce the new restrictions if passed by a majority of county voters. If a majority voted yes, the new ordinance could not be lifted without another vote of the people. If the majority voted no, the supervisors said, they would revisit their Jan. 12 ordinance.

Though language in Measure W was similar to the ordinance supervisors had passed, Burke saw the initiative as a far greater challenge.

“If this goes through and it withstands legal challenge, it’s bulletproof,” Burke said. “If we get a new Board of Supervisors, and they’re all marijuana-friendly, they cannot do anything except take it to another (public) vote.”

Forrest agreed to be the petitioner in a lawsuit that claimed Measure W was “untruthful, confusing, misleading and not impartial.”

Nevada County Superior Court Judge Candace Heidleberger’s March 7 ruling left Measure W on the ballot. But she ordered the county to rewrite the ballot analysis, because it left an impression the initiative would “replace or repeal” the cultivation ban – even though the January ordinance would stand regardless of the vote.

The judge also said the analysis falsely promised that supervisors would draft more permissive rules if Measure W lost, while the initiative language required no such thing.

Every single opportunity the growers have had, they’ve put this family and this young boy front and center. I think they’ve been exploiting this young person for their own financial gain.

Deborah Wilder, chairwoman, Nevada County Republican Party

Forrest immersed himself in political activism in Silas’ name. He printed purple-hued fliers – for the color of epilepsy – and passed them out at a March 8 Board of Supervisors meeting. The fliers included a photo of Silas, wires taped to his face and head, undergoing a procedure at UCSF to test for brain abnormalities. They provided a description of Lennox-Gastaut syndrome along with the headline: “Hope and Compassion: the fight for responsible lawmaking that protects all children with intractable epilepsy.”

Supporters – many clad in purple – streamed into the board room. One man wore a purple Minnesota Vikings football jersey with “Silas” emblazoned on the back. Numerous speakers declared: “I stand with Silas.” Song Kowbell, 58, delivered a tongue-lashing to supervisors “as a mother and a grandmother.”

“I think you can take the compass of a society for how they treat their young and their old people,” Kowbell said. “You wouldn’t stand up for an 8-year-old boy. I would encourage you, if you have any conscience or compassion, to check your compass.”

The purple procession irked some of the people supporting Measure W and the new marijuana restrictions. The Nevada County Republican Party responded with a mass email attacking “commercial growers” of marijuana for cynically exploiting an “unfortunate child.”

County Republican chairwoman Deborah Wilder, a Grass Valley attorney who is also secretary of the state GOP, said she felt for Forrest because “if it was my son, I would be scouring the earth for whatever makes him healthy.” But she said the father and child were being used – and offered no apologies for the email.

“It’s not like these growers are saying, ‘We’re just growing medicine for this young boy,’ ” Wilder said. “No, they’re growing it and selling it all over the place. The overcultivation of marijuana in Grass Valley is a huge problem. ... I think they’ve been exploiting this young person for their own financial gain.”

Patty Smith, president of Grass Roots Solutions, acknowledges some of its members earn a living selling marijuana to medical dispensaries outside the county. But she takes strong exception to being lumped with criminals and profiteers, saying her organization is a law-abiding collective of community-minded, environmentally conscious farmers growing their marijuana in small-scale outdoor gardens.

The number of plants needed for the Silas project has also become a point of contention. Smith and others in the collective contend it takes dozens of outdoor plants to produce enough leaves and buds to create Silas’ special tinctures.

Sheriff Royal said he’s certain the child’s needs could be met with small indoor gardens and medical marijuana sources outside the county. In any case, he said, there was no way Nevada County, of all places, was going to run out of pot.

“I truly believe this family will get their marijuana,” Royal said.

Forrest has continued to press his case, saying the sheriff has no understanding of his family’s excruciating quest for a cure, and how many cannabis strains have failed to stop Silas’ attacks. “Adults, grown adults, think weed is weed,” he said.

 
PAUL KITAGAKI JR. pkitagaki@sacbee.com
Forrest Hurd has taken a lead in fighting an upcoming Nevada County ballot initiative that he says would hurt efforts to craft marijuana treatments for Silas. “Nobody knows when they’re going to be the family whose last resort is cannabis medicine,” he said.

In late February, Burke sent a letter to the Board of Supervisors, asking them to carve out an exemption to Measure W “to allow non-commercial outdoor cultivation of medicinal cannabis for children diagnosed with intractable epilepsy.”

The supervisors refused. Chairman Miller said they had been taken advantage of before by growers who claimed to need more cultivation space for a vast array of illnesses. There would be no exception for Silas.

Medicine of last resort

Nicole said she is “incredibly proud” of her husband “for standing up for Silas.”

But she has found the recent spotlight searing and painful. She takes offense at the local letters to the editor and online comments that portray her and Forrest as potheads or “hippies,” when they are neither – “just regular people trying to help our kid.”

Even friends she has known for years have asked “the silliest of questions,” Nicole said. No, Silas isn’t smoking marijuana. No, the tinctures aren’t the same as honey oil, the liquid hash whose chemical processing has made houses explode.

 
PAUL KITAGAKI JR. pkitagaki@sacbee.com
Nicole Hurd says she is proud of her husband for waging a political battle on their son’s behalf. But she’s found some of the online comments about her family hurtful. “(We’re) just regular people, trying to help our kid,” she said.

Other exchanges have been more antagonistic. Nicole recently walked into the clubhouse at the Lake of the Pines Association, where she works as recreation coordinator. She froze. Sheriff Royal was giving his PowerPoint presentation in support of Measure W and the cultivation ban.

She watched as he delivered his signature line: “This isn’t about medicine – it’s about money.”

“Not for us,” she said aloud, shaking, then wheeled around and walked out.

Nicole didn’t introduce herself to the sheriff. Royal said he never knew she was there.

Silas’ parents have found some relief in knowing their child has been happily oblivious to the political dimensions his medicinal treatments have taken on. He continues to look forward to the two days a week he spends at Ridgeline Pediatric Day Health Center, a Grass Valley facility that provides day care and skilled nursing for children with developmental challenges.

Activities director Shawnna Frazer has come to know Silas as a child full of “happy energy.” The staff is working with him to develop skills to help him cope when he becomes overwhelmed by stimuli. Sometimes, they just marvel at his playful spirit.

“I’m going to eat you for a snack!” Silas exclaimed as he played on a patio in early spring.

“What movie is that from?” asked center director Michael Lyman.

 ‘Angry Birds,’ ” Silas answered.

The staff also has witnessed Silas’ seizures returning in clusters. Lyman said they keep watch for “his twitches and head jerks and body jerks” and log his episodes. The more forceful attacks end in his retreat to a back room “where he’ll lay down, zonked out for an hour or two.”

 
PAUL KITAGAKI JR. pkitagaki@sacbee.com
Shawnna Frazer, activities director at Ridgeline Pediatric Day Health Center, comforts Silas Hurd after he experienced a bad reaction to the glare of the sun.

Still, 15 months have passed since Silas has experienced the most severe forms of seizure – the devastating grand mals, atonic seizures and tonic events – a time period that roughly coincides with his use of Medi-Haze B.

Years ago, Forrest said, doctors told him Silas might not make it to age 10. Now, Dr. Sullivan says he faces a minimal risk of sudden epilepsy death.

“I think we can expect him to live a long life,” Sullivan said. “But given his intellectual abilities and ongoing seizures, it’s hard to think he will ever live independently.”

With the Measure W vote coming up – and the outdoor grow ban already in place – the family’s collaboration with Grass Roots Solutions faces an uncertain future. Smith said some growers may be scared off if the restrictions remain intact. But others plan to defy the ban. And the group is still hoping for a political compromise that would protect small medicinal growers.

On April 20, a purple-clad crowd of marijuana advocates gathered at a Grass Valley theater for an anti-Measure W rally and an update on Silas. It was a sobering session. Forrest played a video on Silas’ life that included images of a sparkling-eyed 3 1/2 -year-old, a sequence of him overtaken by seizures and a photo of him as an older child, lying dazed on the carpet.

The crowd broke into applause when he said Silas went seizure-free for four months while taking Medi-Haze B. It fell silent when he said the seizures had resumed.

“Nobody knows when they’re going to be the family whose last resort is cannabis medicine,” Forrest said. “We’re watching him slip again. It’s more intense every day. We’re up against the clock.”

Following the January ban, Forrest and Nicole started to run low on locally produced tinctures. At the end of April, the family got a new Medi-Haze delivery from Grass Roots Solutions as well as a second tincture, a blend of three cannabis varieties, from a separate Nevada County grower.

Silas went on a new seizure-free streak. On May 20, his ninth birthday, he reached 28 days without an attack. Forrest and Nicole are hopeful, but they know the formulas could fail again, that their child’s suffering could once more intensify. So, amid volatile politics and sustained uncertainty, the Silas project goes on.

Epilogue: Measure W was defeated on June 7 by a margin of 58 percent to 42. That day, Silas reached his 47th consecutive day free of seizures.

 
PAUL KITAGAKI JR. pkitagaki@sacbee.com
With Silas Hurd’s most severe seizures in remission, his doctor says he is at far less risk of sudden epilepsy death. But he continues to face challenges. “It’s hard to think he will ever live independently,” said Dr. Joseph Sullivan.

About the authors

 

Peter Hecht is a senior writer for The Sacramento Bee, where he specializes in coverage of California’s billion-dollar medical marijuana industry. Hecht is the author of “Weed Land,” a 2014 book that chronicles the evolution of California’s medical marijuana movement from its earnest political roots to its emergence as a highly lucrative industry.

 

Paul Kitagaki Jr. is a senior photographer at The Bee. During more than 35 years as a photojournalist, he has covered local, national and international events that have taken him from California to Vietnam, Iraq and six Olympic Games. Among other awards, Kitagaki shared in the 1990 Pulitzer Prize for coverage of the Loma Prieta earthquake while at the San Jose Mercury News.

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